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MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. 635 PROSTATE CANCER SURVIVORS AND THEIR FAMILIES, FROM ACROSS THE UNITED STATES, SHARE THEIR THOUGHTS ON THE PSA TEST. Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page1 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. TensofthousandsofmenthroughouttheUnitedStatesfeelconfusedaboutthe prostatespecificantigenbloodtest.TheUnitedStatesPreventiveServicesTaskForce’s May,2012recommendationagainsttheuseofthePSAtestforprostatecancerscreening forallmenhascausedconcern,angerandfear.MenthroughouttheUnitedStatesnow questionwhetherthePSAtestisrightforthem. Weareconcernedthatmenwillnotlearnthattheyhaveprostatecanceruntilthey aresymptomaticwithalatestagedisease.TheproblemwiththePSAtestisaroundthe timingandextentoftreatmentwhenthereisapositivePSAtestorbiopsy.Those problemsfromover‐treatmentcomefromdoctorsprovidinginadequateconsultations whichcanfrightenmenintotreatmentsthatmaybetoosoonorinappropriate,and patientsthatarewillingtosubjectthemselvestotreatmentswithoutdoingtheresearchto fullyunderstandtheirsituation. Thisbookisintwoparts:Onequitebriefandtheotherquitelong. ThefirstpartcontainsseveralfactsaboutPSAtestingandprostatecancer treatment. ThesecondpartcontainscommentsaboutthePSAtestfrom635prostatecancer patients,wives,husbands,partners,sonsanddaughters.Readthroughthesepagesand youwillfindsomeonelikeyou;someonewhooncewonderedifthePSAtestwasrightfor them. If you are a man with African genetic heritage, then you should know that prostate cancer kills twice as many Black men as it does other men in the United States. As of May, 2012, we do not know why. But, this staggering disparity should give you reason to be more concerned about prostate cancer if you are Black. Some doctors also consider family history of prostate cancer as presenting an elevated risk. Factsyoumustknow: PSAstandsfor“prostatespecificantigen”test,not,“prostatecancerspecific antigentest.”ThePSAtestsuggestspossibleproblemsbutdoesnotdefinethem. Alowor“normal”resultcangiveyouafalsesenseofsafety.ThePSAtestisnotat allfoolproof. AnelevatedresultonyourPSAtestcanstartacascadeofbadchoicesandharmful treatmentsthatmaydonothingtoextendyourlife.UseMalecareandother prostatecancersupportgroupstohelpyounavigatethat. Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page2 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. PSAtestsareonehalfofatwopartexamination…theotheristhedigitalrectal exam,whereyourdoctoractuallyfeelsforlumpsandbumpsthatmaybe suspicious. Beskepticalofstatistics.Fiveyearsurvivalratesforprostatecancerareexcellent becauseprostatecancertendstogrowslowly.Aboutathirdofmenexperience recurrenceandadvancedstagedisease5–10yearsaftertheirinitialtreatment. Beskepticalofanyonewhominimizessideeffectsfromtreatment.Noman emergesentirelyunchangedafterprostatecancertreatment,andmanymen experiencequalityoflifereducingimpotenceandincontinence. Donotrushintotreatment!Askyourdoctorabouttheprosandconsofactive treatmentversusactivesurveillance. According to the American Urological Association, not all prostate cancers require active treatment and not all are life threatening. The decision to proceed to active treatments is one that men should discuss in detail with their urologists to determine whether active treatment is necessary or whether active surveillance is appropriate. WhatisthePSAtest? ThePSAtestisabloodtestthatmeasurestheamountofaprostatespecificantigen, inyourbloodstream.Prostatespecificantigenisaproteinproducedbycellsofthe prostategland.IfthequantityofPSAiselevated,thenthereispresumptionofsuspicious activityinyourprostate.Yourdoctorwillprobablyreferyoutoaurologistforabiopsy. Biopsieshaveasmallriskofinfectionandyoushoulddiscussthisriskwithyour doctor.AskyourprimarydoctortodiscusswhatotherreasonyourPSAresultmightbe elevated.Askaboutinflammationorprostatitis,enlargementoftheprostate,called BenignProstaticHyperplasia(BPH).Sometimesprostateaffectingactivity,likesexor bikeridingridethedaybeforeyourbloodtestcanraiseyourPSAtestresult. Evenifyoudogoforabiopsyandthepathologyreportofyourbiopsydescribes sampleswithprostatecancertissue,youstillarenotatdeathsdoor.Askyourdoctorto reviewyourbiopsyreportwithyou,andalsoasktohaveasecondopiniononyourbiopsy report.Moreinformationaboutgettingasecondopinioncanbefoundat http://malecare.org/second‐opinion‐on‐biopsy‐slides/ Theguysthatweworryaboutmostaretheoneswhogettreatedbythefirstdoctor theymeet,andthinkthattheyarenowcured.But,youarenotlikethat.Weknowthat becauseyouarereadingthisbook.Youarealreadylightyearsaheadofmostcancer patientswhoknuckleundertotheirdiagnosis.And,becauseyouareseekinginformation, Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page3 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. youhaveagreatchanceofgettingthebestpossibleoutcomeofanymandiagnosedwith prostatecancerin2012intheUnitedStates. Consider avoiding the PSA test if you feel that you might die in ten years or less, either due to advanced age or pre-exiting illness. ProstateCancercanremainsmall,containedandreasonablystable.Inthis situationitposesnohealthrisk.Mostprostatecancersgrowsoslowlythatyouwilldie fromsomethingelsebeforeyouwillbeoldenoughforprostatecancertokillyou.But,for approximately30,000menintheUnitedStates,everyyear,prostatecancergrowsrapidly andissoaggressivethatitwillkillyouregardlessofwhenitisdiscovered. Avoid public prostate cancer screenings if you are predisposed to mood and anxiety disorders. Only have a PSA test after speaking with your doctor. First:Makenodecisionsuntilyouarecomfortablyinformedaboutyoursituation. Readthepatientanddoctorwrittenarticlesaboutprostatecancersymptoms, treatmentandcausesonmalecare.org. Prostatecancertendstobeprogressslowly.Thereisusuallynoneedfor urgency.Butmakenomistake…somemendodiefromcancer.Thereisnoworseside effectthandeath. Ifyourdiagnosisisgenuinelygrave,yourdoctorwilltellyou.Ifnot,thentaketime tounderstandwhatyoucandotoextendyourlife,withoutdamagingyourqualityoflife. Second:Askquestionsaboutyourcancerdiagnosisandcancertreatment. Answersaboutcancerwon’tfindyou,youhavetoask.Pleasedon’tassumethat yourdoctorwilltellyoueverythingthatyouneedtoknow.Therearelistsofquestionsfor youtoaskaboutprostatecancertreatmentsontheMalecare.orgwebsite. ProstateCancertreatmentmayextendyourlife,butmightalsocausecollateral damageorsideeffects,suchasincontinenceorimpotence.Eventhebesttreatment choicemayhaveconsequencesyouprobablywon’tlike.Andnocurrentlyavailable treatmentisperfect.Aboutathirdofallmenseetheirprostatecancerreturntothreaten theirlifeaftertheirinitialtreatment. Learnaboutthedifferencebetween“cancercure”and“cancertreatment.” Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page4 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. Third:Decideforyourselfifyoucanmanagetohaveahappylifeifyourdoctortells youthatyouhaveacancerinsideyou,butthatitwon’tkillyou. Howmightyoufeelwhenyouheartheword,“cancer,”inthecourseofyoureverydaylife, knowingyouharboratumorandthatthereprobablyisn’tanythingthatyoushoulddo aboutit. Fourth:Speakwithotherguysatanonlineorin‐personprostatecancersupport group. Youarelucky.Ouronlinesupportgroups,withhundredsofguysparticipating everyday,areonlyaclickaway.Hearourstories.Putyournaturalandperfectlyhuman thoughtsandfearsintoamorehelpfulperspective.Cancertreatments,symptoms, diagnosis,andcausescanbeconfusing…weareheretohelp. Mostmenexpecttheirdoctortorecommendthepreciseprostatecancertreatment thattheyneed.Theyaresurprisedandanxiouswhenthedoctordiscussesseveral possibletreatmentsandsaysthepatienthastodecideforhimselfwhichonetochoose. Mostallmenfindvalueinspeakingwiththethreedifferentspecialiststhattreat prostatecancer:urologist,aradiationoncologistandamedicaloncologist.Get consultationswithallthreebeforemakinganydecisionabouttreatment,togetabalanced pictureofthebenefitsanddrawbacksofallthecancertreatmentoptionsavailabletoyou. Instantlyquestionanydoctorwhosaysthatsheorhecan“cure”prostatecancer. Whatdoes“cure”reallymeanforaprostatecancerpatient?Beskepticalofanydoctor whodiscountsorminimizesthepossibilityofincontinenceorimpotencefromthevarious prostatecancertreatments. Askifactivesurveillance(monitoringyourcanceruntilatimewhentreatmentis absolutelynecessary)isappropriateforyou.Trytobringasecondsetofears,afriend, familymemberorvoicerecorderwithyouduringallconsults.Youarehuman,anditis difficulttohearandlater,remember,everythingthatyourdoctormaytellyou.Readmore aboutdoctorchoicemakingandgettingagoodconsultatMalecare.org. Then,taketimetoletallofthisnewinformationrelaxintoyourthinking. Experiencetellsusthatmenwhotaketimetogetanunderstandingoftherealitiesof prostatecancerwillfindthemselvesmakingtreatmentchoicesthattheycanlivewith, withoutregret,nomatterwhattheirlongtermoutcomes.Theguyswhosuffermostare thosewhosuccumbedtotherushtotreatment. Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page5 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. Now,continuereadingthroughthehundredsofpatientexperiencesaboutPSA testing.Youarefreetoskim,orreadclosely,but,doaskyourselfwhilereading,ifPSA testingisrightforyou. Moreinformationaboutprostatecancer,andprostatecancersupport groups,canbefoundatwww.malecare.org.Pleasefeelencouragedto contactmeifyouhaveanyquestionsorcommentsaboutthisbook. Note:Thephotosinthisbookarenotnecessarilythatoftheperson whowrotetheadjacenttext. DarrylMitteldorf,LCSW ExecutiveDirector Malecare,Inc. Menfightingcancer,together. [email protected] Now,pleaseproceedtothenextpage. Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page6 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. Richard IamlivingproofofthevalueofthePSAtest.Iwasasymptomaticatage49andwas diagnosedwithaPSAof58withmyfirstPSAtest.IwishIhadbeentestedearlier. Gary MyDoctorfoundmyPSAgoinguprapidly.Heorderedmetogetabiopsy,andit wasfoundIhadahighcountthatshowedIhadprostateCancer,anditwasavery aggressivetype.Ifeelthetesthassavedmylife,asearlydetectionallowedthemtotreat mebeforeitspreadtootherareaofmybody. Thomas PSAtestprobablysavedmylife.HadIheededthewarningandmyprimary physiciandonealsoImayhavehadmycancerremovedearlier.NowatthistimeIamwith prostatecancerandPSArisingevenafterradicalprostatectomy.MysonalsohadPSAtest asfirstindicationofhisprostatecancer.Ihavefivesonsandtheyareallatrisk.Atthis momentwehavenobetterwarningsystem. Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page7 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. Luke IgotmyPSAtestedforthefirsttimewhenIwas51yearsold:averyhighand dangerousscoreof38wastheresult.MybiopsyshowedcancerwithaGleasonscoreof 3+4=7. IattendseveralgroupmeetingsoftheMalecaregroupinNYCanddecidedtogofor thesurgery.IamnowwatchingmyPSAscoreaftersurgery,becausethatisthebestway toknowwhentokillmycancerifitevercomesback. IfmyGPdidnotrecommendaPSAtest,Iwouldstillbeunawareofadeveloping cancer;nowIhaveafightingchance. ItisnotthatthePSAscreeningtestthatistheissue,itiswhatthepatientand doctorsdowiththeresult.PleasecontinuePSAscreeningforallhighriskmenandallmen over45yearsold. Michael In2008Iwenttomydoctorforaroutinephysicalandfoundthatinthetwoyears sincemypreviousexammyPSAhadincreasedfrom2to10.Adigitalexamrevealedan anomaly.AsubsequentbiopsyreturnedadiagnosisofprostatecancerwithaGleason scoreof7(4‐3). AfterconsideringmyoptionsforacoupleofmonthsIchoseIMRTRadiation therapyandnow,threeyearslater,IamcancerfreewithaPSAof0.4.Ihavenotsuffered anysideeffectsfromthetherapyandmylifecontinuesasitdidpriortotreatment. PSAtestsarenotanissue.Theissuesrevolvearoundsideeffectsfrombiopsiesand therapiessuchassurgery.Weneedtorefinetherapiessothatmenexperiencefewerside effects.Andwhenappropriate,themedicalcommunityneedstomoreconvincingwhen theypromotewatchfulwaiting. Eric After25yearsofPSAtestingmyresultsstartedtoincreasedramatically.Aftera positivebiopsyIelectedtohaveaRobotic‐assistedlaparoscopicprostatectomy.Ihave hadacompleterecoverywithminimalsideeffects. WithoutthePSAtestIwouldneverhaveknownaboutmycancer.Althoughthe PSAtestisnotperfect,untilthereissomethingbetter,Ifeelmenshouldcontinuewiththe testing. Robert MyfamilydoctorwatchedmyPSAnumbersoverafewyears.Whenthenumbers begantorise,herecommendedabiopsyoftheprostate.Whentheresultscamebackas positiveforcancer,Isoughtthebestsolution.BothdoctorsIconsultedrecommended Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page8 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. surgeryforamaleofmyage.IhadaradicalprostatectomyandmyPSAremainsazero, threeandahalfyearslater. WithoutthePSAtestsandthetreatment,Ilikelywouldhavehadcancerthat spreadandperhapswouldhavekilledme. Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page9 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. Paul AcoupleofyearsagoduringaroutinephysicalthroughaPSAtestmyprimarycare physicianfoundittobeveryhighat42andsentmeofftoanurologist.HediscoveredI hadaninfectionandprescribedamedicationtobringthenumberdown.Itdidcome downbutnowonlyto15somyurologistdidabiopsyandfoundcancerinmyprostate.I electedforsurgery.Iamnowcancerfreeandfullyrecovered.HadInothadaPSAitwould havebeenamuchdifferentstory. Richard Beingasurvivorofprostatecancer,Icanattesttotheimportanceofhavingablood testforProstateSpecificAntigen(PSA).ItisfromaseriesofPSAtests,producingan upwardtrend,thatfurtherinvestigationbecamewarrantedandrevealedanaggressive cancerrequiringtreatment.FormeDigitalRectalExams(DRE)performedatthesame timerevealednoevidenceofcancer.Itisimportanttonotethatsincethereisnohistoryof prostatecancerinmyfamily;PSAtestingledtoearlycancerdetectionandsavedmylife. William WithoutPSAtestingmycancerwouldhaveremainedundetecteduntilatumorwas largeenoughtobedetectedinaroutineDRE.WhenthePSAwasover4.0(nothingnoted onDRE)IwasreferredtotheurologistwhodiddetectsomethingonaDRE.Asubsequent biopsyconfirmedthecancer.ThebiopsyresultsalongwiththePSAhistorywhichshowed therapidincreaseinPSAlevelresultedinmydecisionforprostateremoval.Inthe absenceofroutinePSAtestingandtheresultinghistorymycancercouldhavegone undetecteduntilitwastoolate. Ken Afterage50thePSAwaspartofmyannualcompanymanagementphysical.I continuedtohavethePSAdoneafterretirementatage66.Atage68thePSAincrease causedmydoctortosendmeforabiopsywhichwaspositiveandscary.Afterthe4 monthsofdailyradiationbothPSAandinternalexamshowednomoreprostatecancer. WithoutthePSAtesting,IwouldneverhaveknownasIwasanotherwisehealthymale.I nowexpecttoenjoytheLIVINGbenefitsofmyretirementyearsforalongtime. Ted ProstateCancerkilledmydad.Iwasdiagnosedatage47.Haditnotbeenforan elevatedPSAIwouldnothaveinvestigateditfurtherandfoundit.Iamnowgoingon7 yearsasasurvivor. Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page10 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. Anonymous ThePSAjustsavedmylife.I'm57anditdoubledinayear.Thatistheonlyflag‐ coupledwithtypicalurinaryissuesandfatigue‐thatpromptedthebiopsyanddiagnosisat Stage1.Ihadmyprostateremovedlastweekandwilllikelyneverhavethatcanceragain‐ becauseitwasdetectedearlyandthereforeverytreatableorremovablewithlittlechance ofspreading.Oh‐PSAtestingwillconfirmthatalso.It'sabsurdthatinsurancecompanies wouldbothpromotepreventiveandwellnesscareandthennotpayforthePSA's. Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page11 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. Raymond PSAtestingallowedmetotracktheprogressofanenlargedprostatetothepoint wherewatchingandwaitingseemedanunnecessaryrisk.Atthatpointabiopsywas indicatedandperformedwhichresultedinastage3readingandtreatmentbyradiation.I was79yearsold.Iamnow90andtheradiationtreatmentwascompletelysuccessful.PSA testinginmycasewasanecessarypartofthediagnosisandtreatmentandavoidedundue worryandindecision.Toavoiditseemedtometheheightofsilliness. Phillip PSAandDREtestssavelives. Iamacommercialaviator–anairtransportpilot.Twenty‐twoyearsagoIwas flyingcorporatejets,andIwasrequiredtoundergoamedicalexaminationeverysix monthstodemonstratethatIwasfittofly. Myaviationmedicalexaminer[AME],acardiologistcertifiedbytheFederal AviationAdministration,wasrequiredbytheFAAtoofferallmalepilotsage40andolder adigitalrectalexamination[DRE]forearlydetectionofprostatecancer–secondgreatest killer‐cancerofmen,afterlungcancer,andcauseofdeathofmorethan34,000American menannuallyinthemid‐to‐late1980s. Atthattime,theFAA,likemanyfederalagencies,withoperationaltruckers, railroadengineers,ship’sbridgecrews,militaryandcivilianflightpersonnel,andothers wererequiredtocomplywithanedictfromtheCentersforDiseaseControlinAtlantato offermalesaged40andolderdigital‐rectalandprostatespecificantigen[PSA]testingfor prostatecancer. InFebruary1989,myAMEfoundaninduration–alumpinthedistalportionofmy prostate.HerecommendedIconsultwithanurologist.Ididsobuttheurologistthoughtit wasmerelyanenlargedprostate,andtreatedmewithantibiotics. Fouryearsandeightflightphysicalexaminationslater,myAMEwassoalarmed overwhathedescribedasthehardestlumpheeverpalpitatedinapilot’sprostate,thathe recommendedIseekasecondopinion. WhenIadvisedmyurologistofmyAME’sconcern,heagreedtobeginaseriesof six‐needlebiopsiesofmyenlargedprostate.Finally,inlate‐1993,afterthreebiopsiesand 18needletissuesamples,theurologistandhistechniciansfoundAdenocarcinomacells– prostatecancer,judgedbyalocalpathologisttobeGleasonScore6. Bylate1993,scansandvarioustestspromptedmyurologistandvarious consultingspecialiststodeterminethatmytumorhadlefttheprostate,wasinmy abdomen,andhadmetastasizedtomypelvis,ribs,andotherbonesinmybody. Andsobeganmylongbattleagainstprostatecancer. Nineteenyearslater,afterunsuccessfulexternalbeamradiation[70Grayover sevenweeks],nearlysevenyearsofandrogendepletiontherapy[ADT],severalhormone shots,65hoursofhyperbaricoxygentreatment,participationina28‐manphaseone prostatecancervaccineclinicaltrial,IcontinuetoundergoregularchecksofmyPSA. Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page12 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. Ihavediscontinuedmedications,mytumorgrowthapparentlyiscontrolledandI amaveryactive,productivememberofsocietywho,atnearlyeighty‐oneyearsofage, participatesasanexecutiveofficerofa39‐stateprostatecancercoalition,Iamacertified flightinstructorforsingle‐andmulti‐engineaircraft,instrumentflightinstructor,witha commercialseaandmanyotherflightratings. IamafirmbelieverinDREandPSAtestingtodetectpotentiallylethalprostate cancerasearlyaspossible,andtocontrolorcurecancer,ratherthandiefromit,liketoo manyofmydeadfriends. Anonymous IammarriedtoamanwhodiscoveredhehadprostatecancerbecauseofaPSA test. IbelievethathewouldnotbewithmetodayunlesshehadaPSAtest. Bruce Iwasdiagnosedwithprostatecancerinlate2003becauseoftheearlywarningsof thePSAtest.Theoriginaldiagnosiswassubsequentlyconfirmedbybiopsyandlaterin May2004receivedasuccessfulradiationseedimplant.Ihavenodoubtthatwithoutthe PSAtestdetectionoftherelativelyrapidriseinmyPSAthatIwouldhavefacedan uncertainoutcome. Greg Aboutoneyearago,aftertheurgingofmywife,Iwentinforaroutinephysical,a PSAscreeningwaspartoftheprocess.TheresultscamebackwithanevaluatedPSAlevel withpromptedtheschedulingofavisitwithanurologist.HisPSAtestalongwitha prostateexaminewarrantedaprostatebiopsy.Withthoseresultscamethephonecall thatchangedmylifeforever,IwastoldIhascancer. Iunderwentsurgerytoremovemyprostateandknockonwood,myfirstyearasa cancersurvivorhasbeenanenlighteningone.WhenIreadanarticleabouttherecent reportthatPSAtestsareunnecessaryandthattheyhaven’tsavedanyone’slifeIalmost felloutofmychair.IamlivingproofthatthePSAtestcananddoessavelives,itdidmine. Val AfterIfinishedprotontreatment,IwastoldtogetPSAtestedevery3months.PSA hadbeenaround0.3forayearandIalsocontinuedmyLuproninjections.ThenPSA startedtodoubleevery3monthsandayearlateritwasover4.Myoncologistbecame concernedbutneededtobesureitwasnotatestingerror,soaretestresults2weeklater showedevenahigherPSA.Wealsoneededtomakesurewewerenotexperiencingan Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page13 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. infection.Wetriedoneantibioticfortwoweeks,itdidn’tworkPSAon12/04/2010was 9.3sowewenttoanotherfamilyofantibiotics–nohelpPSA17.8on1/24/2011. MyoncologistsuspectedcancersowestartedwithbonescanthenCTandMRI,no cancerdetectedbutPSAroseto25.6by03/10/2011.Oncologistdidnotgiveup,he obtainedpermissionforPETNaFF18(designedforboneinvestigation)–nothing positive.HethenrequestedPETdfgF18–Bingo–almostallabdominalandsomechest lymphnodeswerefilledwithcancercells.Myprostateontheotherhandwasclear indicatingProtonCenterdidagoodjobbutunfortunatelycancerbecamemetastaticprior totreatment.PSAbecametheguidethatletusdiscoverlocationofmycancerthrougha rightinstrument.RadiationoncologistsuggestedIgotoamedicaloncologistfor treatment. AftermanytestsandscansmymedicaloncologiststartedmeonDocetaxel chemotherapyon4/07/2011.PSAwasstillrisingandafter4infusionsMRIindicated growthinlymphnodes.IwasswitchedtoCabazitaxel(Jevtana)chemotherapyandPSAat 30on07/12/2011.After4treatmentsPSAincreasedto48.35on09/16/2011soanother MRIshowedfurthersmallincreaseinlymphnodesizes.On10/062011withPSArisingto 50.61itwasdecidedtodiscontinueCabazitaxelandtryZytiga.Aftermuchapprovalwork IstartedZytigaon10/21/2011andplansaretomonitorPSAevery3weeksprobablyfor next8months. Asonecanseefrommyexperience,PSAwasavaluabletoolthatmyradiation oncologistwasurgedtokeeplookingforcancertillitwasfound.Mymedicaloncologist usedPSAtorequestMRIforconfirmationthatchemowasnotworkingandchangeshadto bemade. Anonymous Iamasurvivorofprostatecancerforover4years. IhavehadaseriesofPSAtestsovertimeandIskippedonePSAtest.Thefollowingyear, whenIwas73,thetestprovedpositiveandwithaGleasonScaleof9,whichledto radiationtreatment.IfIhadnothadthatPSAtest,IfeelcertainthatIwouldnotbethere today.MycurrentPSAtestwas.02 Therewasnoprostatecancerinmyfamilyhistory,whichsomewouldsayisa reasonnottohaveaPSAtest.Iwouldsaythattheyarewrong. Craig Ittookme14yearstofinallygoformyyearlycheck‐up.AndIgotthebadnews thatIhadprostatecancerhadaPSAof59.9andwasoutsidetheprostategland.IfIwas onethoseguysthatwentforannualphysicals,IwouldbewhereI’mnow. Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page14 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. Stephen Iwasdiagnosedwithprostatecanceratage53.Bythetimeitwasdiscoveredbya digitalexam,ithadspreadbeyondtheprostate.HadIfollowedtheguidelineoftesting PSAatage50,Imightnotstillbedealingwiththecancerbecausethetreatmentsmight haveputitintoremission. Joe IhadanelevatedPSAnumberatage64.Mydoctorsuggestedanothertestafter threeweeks–itwasalsoelevated.HesuggestedIvisitaspecialist.Hedidnormaltesting andsaideverythinglookedOK.But,sinceyouareinherewhynottakea biopsy,whichtheydid. HeaskedmeaboutthesevennormalindicatorsforProstateCancer–Ihadnone. TheresultscamebackandItestedpositivein3ofthe8tests.Afterdiscussingitwithmy regulardoctorandfamily,Ischeduledtheproceduretoremovemyprostate.After Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page15 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. operationtheyfoundthatIhadcancerontwooutersidesoftheProstategland.Further follow‐upshaveproventhecancerdidnotmovebeyondthemargins.AFTER10YEARSI AMHEALTYANDNOSIGNSOFRETURN. IcautionedmythreesonsandmybrotherthattheyshouldrequestaPSAteston theirnextannualphysical.Theydidthistogetabase‐line’oftheirPSAlevel. Allturnedoutnormal. LASTYEAR,THEPSAOFMYELDESTSON(age51)WASELEVATED,theydid normalfollow‐upsandretesting.WithinsixmonthsHEWASALSODIAGNOSEDWITH PROSTATECANCER.Now,sixmonthslater,hehashadRoboticsurgeryandhadthegland removed.Followuptestinghassofarproventhatithasnotspread. Ward 3yearsago(atage58)IhadnotevenheardtherewassomethingcalledProstate Cancer(PC).IhadneverhadorheardofaPSAtest.Iwashavingsymptoms(Ididnottell anyoneabout)thatIdidnotunderstand.So(2and1/2yearsagoatage59)Iwentfora physical.AsaroutinemynewdoctorincludedaPSAtest.ADREdidnotindicateanything. Theresultwas75.Heknewrightawaywhattheproblemwasandsentmetothe Urologist(bythenthePSAhadrisento79).Afterbiopsies(all12sampleswereallPC)and scansitwasdeterminedthatIhadStage4advancedmetastatic(Gleasonscore9)PC.It hadalreadydamagedpartofmybladder.Ithadspreadthroughmanylymphnodes(more biopsies)upmyback.OfcourseIstartedtreatment. NowwhenIgetaphysicalmydoctorremindsme(accurately)thatIwouldbedead todayifitwerenotfortheroutinePSAtest.MyfamilyandIallthankGodthatmydoctor hadtheforesighttoincludethat“routine”PSAtest. Anonymous MyPSAwasdeceptivelylow,1.5,foramanof66years,butaroutinedigitalrectal examtoldthestory.OnemightthinkthatIwouldbeopposedtothePSAtest.Onthe contrary,Ihavetoomanyfriendswhofirstlearnedofapossibleproblemastheresultofa highPSA.ThisledtoaDRE,biopsy,etc.resultinginthediscoveryofaggressiveprostate cancer.Thetestisfarfromperfect,butitisoneofaveryfewtoolswehavetopointusin therightdirection.Hopefullynotreatmentiseverperformedwithoututilizingallthe toolswehave. Therearenearly34,000reasonswehaveeachyearintheUnitedStatestoremind usoftheimportanceofeverytool,nomatterhowimperfect.Wecannotlosesightofthe livesthatarelost. Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page16 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. Ed ItstartedinNov2009.DuringmyregularphysicalIhadaPSAtest.Thenumbers werealittlehighandIhadanotherone6monthslater.Itwentupagain.Iwasputon antibioticsfor3weeksandthenanotherPSAtest.Itwasupagain.Thatledtoabiopsyand inNov.2010,Iwasdiagnosedwithaveryaggressiveprostatecancer.Nofamilyhistory andnosymptoms.IhadaradicalprostatectomyinDec.2010andamalivetodayand recoveringnicely.TheonlyreasonIamaliveisbecauseofPSAtesting. Harley Inthesummerof2007asapartofaroutinephysical,mydoctororderedaPSA test.AbloodtestrevealedanelevatedPSAcountandIwasreferredtoaUrologist.What followedwasabiopsyresultinginaGleasonScoreof8.Furthertestingrevealedthe cancerwasisolatedtotheprostateandIbegantoresearchthevarioustreatmentoptions availabletome.Followingmuchresearch,asecondopinionandalongconsultationwith myurologistIoptedforaradicalnervesparingsurgeryprostatectomy. ThiswasnotadifficultdecisionasthiswasnotmyfirstcancerandatthetimeI was57yearsold.OfcourseregularPSAscreeningfollowedthesurgery.Myscoreswere wellwithinintheacceptablepostrangesurgeryuntilJuneof2011.Again,throughtheuse ofPSAtestingIwasdiagnosedwitharecurrence.Nowtheprocessofresearch,securinga secondopinionandmeetingswithmyurologistareassistingIamexaminingtreatment optionstohandletherecurrence.MyfamilyandIfeelthatthePSAtestwasalifesaverand I’mforevergratefulofitsavailability. Linda Mystoryisalittledifferent,asthePSAdidnotsavemyhusband.Hewasoneofthe 2.8%thathadtherareaggressivetypeofcancer.HisPSAcamebacknormal,asdidthe physicalexam. InJulyof2009,justafterwebothretired,hefellinourpoolbreakinghisback, leavinghimparalyzedfromthechestdown.Hediedonceduringsurgery,andtheynever expectedhimtomakeitoutofrehab.Hefought,andcamehomeafter5weeksinrehab, notevenneedingsub‐acuterehab.Hecamehomewithpaininhisshouldersandchest.His painwasignored,andblamedonthespinalcordinjury.Itwasbonemets.Beforehefellin thepool,hehadbeenhavingproblemswithfrequenturination,slowstream;allthered lights.Butduetohisinjury,thatallbecametransparent,ashehadtoselfcatharsize himself. Finallyafter8daysinbedandnohelpfromhisdoctorsItookhimtotheERwhere theyfoundthebonemets.Fromthereonitwasadownwardspiral.Wedidlotsof alternativemedicine,stoppedthechemoasthatjustaboutkilledhim.Ultimatelythe cancerwonandIlostmybestfriendandsoulmate.Iamcrushedandlostwithouthim. ThePSAisnotthebesttestintheworld,butit’sallmenhavetouseasabaselineand Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page17 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. somewhatpredictorofaproblem.Amanandhisfamilyhavetherighttomaketheir decisiononatreatmentcourse.NotdoingthePSAandnotpayingforitwillcostour spouses,fathers,sons,brothers,andfriendstheirlives. Rick Turning50,Ihadnonoticeableissueswithmyprostate,butitwasrecommended thatIhavemyfirstbaselinePSAscreeningforprostatecancer.Thetestcamebackhighat 6.2,threemonthslaterat8.1,andoverthenextfewmonthsitwentupto10.2.ThoughI hadasmallprostateandnoothersymptoms,Ihadthebiopsy,whichunfortunately showeda75%malignancy. Aftersomeresearch,Ichosetohavea(robotic)radicalprostatectomy,wherethe post‐operativebiopsyshowedanaggressivecancerveryclosetotheedge,butluckily withinthemargins.Previousfinger(rectal)examsdidnotsuggestanyearlier(insurance covered)PSAtest,soIamgratefulthatmy‘agefifty’insuranceguidelinewasineffect. IwouldevensaythatassertivelyloweringtherecommendedPSAscreeningageto40, couldgiveamanbetterpreventativeoptions,especiallyforthoseathigherriskof prostatecancer. IamawarethatthePSAtestisn’texacteither,ithasitslimitations,butitisoneof thefewtoolswehavethatcanaidinearlyprostatecancerdetection.ThePSAscreening,a simplebloodtest,wastheredflag(notaproblemcreator)thatsavedmylife. Donna Ihavelostonebrothertoprostatecancerattheageof57.Bythetimeitwasfound ithadspreadtohisbones,lymphnodesandultimatelybraintumors.Ifthedoctorhad onlydoneaPSAtestwhenhefirsthadsymptomsormoreimportantlyifithadjustbeena routinetestforhimlikeamammogramisforme,wouldhestillbeherewithustoday?But hehassavedhisyoungerbrother’slife. Atage49,ouryoungerbrotherhadbeentestedforacoupleofyearsnowandwhen therewassuddenlyarapidriseinhisPSAlevelwasimmediatelysenttourologist.Aftera biopsythedreadednewscameonceagain.Butbecausetheyweretestinghim,itwas caughtinveryearlystageandheoptedforradicalremovaloftheprostateandamonth aftersurgerynowisdoingfinewithnocomplications.Hewillcontinuetobewatchedto makesurethereisnorecurrence. William IwasdiagnosedwithprostatecancerinMayof2005.3of12coreswerepositive, Gleason7andahighPSAof50.IhadroboticsurgeryinSeptemberof2005andmyPSA hasbeen0.01orlowereversince.ThankGodtosometerrificsurgeonsandthePSATEST. Thistestisthebestthatwehaveatthepresenttime.Whynotkeepusingit.Icouldsee stoppingitsuseifyouhadsomethingbettertoreplaceit,butyoudon’t Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page18 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. Mark Myeldestbrotherwasdiagnosedwithprostatecancerthathadspreadbeyondthe prostateover8yearsago.Sincethattime,IwastakingmyPSAtwiceayear.Andoncemy PSAshowedsomeerraticreadings,Iwenttoaurologistandhadabiopsy.Inadditionto twiceayearPSAreadings,biopsiesandaPC3test,acanceroussamplewasdiscoveredon oneof16samplesextracted.Fromthat,Idecidedtohavemyprostateremoved.The cancerwascontainedinsidetheprostate.I’vehadtwoPSAreadingssincesurgeryandthe cancerisundetectable.IwillneedtotakePSAtestsfortherestofmylifetodetermineif theantigenispresentordetectable. Edwin AttheyearlyphysicalinNovemberof2005IwastoldthatmyPSAhadjumpedtwo pointsinthelastyearandwassenttoaurologist.HedidabiopsyandsaidthatIhadtwo canceroussamples.ThereforeIhadtheprostateremovedinMarchof2006andthepost‐ Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page19 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. surgicalbiopsyonceagainconfirmedtwoareasofcancerwithGleasonscoresof3‐3and 3‐4,respectively.TheurologisthaskepttakingPSAreadingswhichwereessentially0 rightaftersurgeryandhaverisentoa0.2now5.5yearslater.IamthankfulthatthePSA testhelpedusfindthecancerandthattheurologiststillhasthistooltofollowany changes. John IwasdiagnosedwithprostatecancerinMarch2010.BecauseIhadestablisheda baselinePSAat50yearsofage,myvelocityindictedaproblem.AbiopsyledtoaGleason scoreof7(4+3)andacommentfrommyurologistthatmyintermediateaggressivecancer undiagnosedwouldhaveledtomydeathin3‐5years.Aftermuchresearch,Ichosetouse protonradiation.ThankstothePSAtestandmyoutstandingtreatment,myPSAisdown to0.9andmylongtermprognosisisexcellent.Ihavenosideeffects15monthslaterandI havemuchtobethankfulfor,especiallymyyearlyPSAtest. Anonymous Whenmyhusband’sprostatecancerwasdiscovered,hisPSAwasalreadyover100. Hewas58.Hehadapaininhisbackandwelearnedthattumorswererampantupand downhisspine.3yearsearlier,hisPSAwas“normal.”Afternumeroustreatmentsand clinicaltrials,hediedatage59. Hiswas,obviously,themoreaggressiveformofcancer.But,withannualPSAtests, wemighthavecaughtthisandtreateditinsuchawaythathewouldstillbealivetodayto enjoyhisgrandchildren,andcontinuetogivebacktotheworldthathadgivenhimso much.I’drathererronthesideofcautionwhenitcomestoPSAtestingasIsowishwe haddone.Imisshimterribly. Rick Iwilljusttellyouofmyexperience.Iwentforaphysicalafternothavinggoneto theDr.’sforafewyears.HeorderedaPSAanditcamebackat4.5Ihadnosymptoms exceptabitofurgencyandgettingupatnightafewtimes.CheckingbackonearlierPSAsI foundthatIhadslowlybeenrising.MyurologistorderedabiopsyandIwasdiagnosedat 61andhadsurgeryjustbeforemy62ndBirthday.Ichosetheroboticradicalsurgery. IwasstagedT3a,withaGleason6(3+3).Bonescanwasclear,aswerethelymph nodesbutthecancerhadprogressedbeyondthecapsule.Ihavecontinuedwithtwice yearlyPSAswhichhaveremainedundetectable.Ihaveelectednottohaveradiation unlessthePSAbeginstoriseagain.IamverygladmyDr.orderedthatPSAasmyfather KidneyCancerat50andmymotherhadBreastCancer. Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page20 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. Anonymous MyprostatecancerwasdiagnosedwhenIwas60yearsold.Iamnow73.ThePSA testsindicatedthatmyPSAscorewasrisingovera24monthtimeperiod.Abiopsywas performedandthecancerdiagnosiswasconfirmed.IwastreatedbyBrachytherapy (radioactiveseedimplantation).ThiswasfollowedupbyExternalBeamRadiation treatmentforsixtoeightweeks. Sincethetreatment,IhavehadmyPSAtested,initiallysemiannuallyandthen annually,andsofarmyPSAscorehasbeennegligible.Ihavehadnosideeffectsfromthe treatmentsandsofarIamdoingwell.Iamstillsexuallyactivebutatareducedleveland withthehelpofViagra.Idon’tknowifthereducedsexualactivityistheresultofthe radiationorifthatiswhatnaturallyhappensatmyage. Iamdistressedthatthereislittlemoreknowledgeabouttheappropriate treatmentcoursenowthanwhenIwasdiagnosed13yearsago.Mentodayfacethesame difficultandstressfuldilemmawhentryingtodecidewhatisbestforthem.Bottomline formeisthatIampleasedthatthePSAtestinghelpedfindthecancerandthatmy treatmentappearssuccessfulatthispoint. Richard ThePSAtestsavedmylife.Itestedpositive10yearsagoattheageof58andhad surgerytoremovemyprostate.Myfatherdiedofprostatecancer.Iamthankfulthatmy PCPinsistedthatIgetaPSA. Robert PSAtestingsavedmylife.Myusuallineis“Mywifesavedmylife.”Iwas59,had shinglesandhatedgoingtothedoctor.Shemademeseeherinternist.Hecouldn’tcure theshingles,but,sinceheansweredtomywife,hegavemealongoverduecomplete physicalincludingaPSAtest.Afewdayslater,hecalledandsaidmyPSAwassomewhat high.Itwasprobablynothing,buthethoughabiopsywouldbeagoodidea. Iputoffgoingtotheurologistforafewmonthsbecauseofwork,holidays.Again theurologistsaiditwasprobablynothing,butherecommendedwecheck.Iagreed. Theprocedure,totakeadozensamplesfromdifferentareasofmyprostate,was unpleasant,butnotawful.Thepre‐testanxietywasactuallyworsethanthebiopsy.Ileft prettyconfidentthatweweredonewithmedicalstuff. TheurologistcalledonaFridayafternoonandaskedmetocomerightover.My wifemetmeattheoffice.Thedoctorseemedupsetashetoldusthatthetestwaspositive. Infact,cancerwasfoundinalmostallsamplesandtheGleasonscore(aseverity measurement)was7,moderatelyhigh.Atthatpoint,mycancerwasconsideredtobe StageT2(onascaleofT1,leastsevere,toT4,mostsevere). TheurologistbrieflyoutlinedtherangeofchoicesIhadtodealwiththisnews– ongoingmonitoringwithoutactivetreatment,calledwatchfulwaiting;varioussurgical Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page21 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. approachestoremovetheprostateand,ifnecessary,surroundingtissue;orradiation treatments.Othertreatments,suchaschemoandhormones,probablywouldbe consideredifoneofthefirstthreewerenotsuccessful.Hesuggestedthatwedosome researchonourown,talkwithourinternistandthinkitover. Aftermuchreading,talking,conferringwithotherdoctors,wedecidedonradical prostatectomy,surgicalremovalofmyprostate.Duringtheprocedure,thesurgeonfound thatmyseminalvesicles,outsidetheprostate,werealsocancerousandremovedthemas well.Fortunatelynolymphnodesshowedcancer,reducingtheriskoffurtherspread.The stageofmycasewaschangedtothemoresevereT3bN0becauseithadspreadjust beyondtheprostate. Duringfollow‐uptestingafewmonthslater(PSAagain),itwasdiscoveredthatI stillhadcancerousprostatecellsactivesomewhereinmybody.Afterconferringwithmy wife,surgeon,internist,andaradiologist,Ibeganradiationtreatment.Myoncologistalso offeredmethechoiceofjoiningaclinicaltrialusingchemotherapyandhormone treatments,thetheorybeingthatthiswouldpreemptivelykillanyremainingcancer beforeithadachancetoreestablishandspread.Again,mywife,myinternistandI discussedit,andwedecidedtoproceed. Eachofthesetreatmentswasunpleasant,tosaytheleast.Thesurgeryleftme frightened,miserableforweeks,andexhaustedformonths.Theradiationsappedmy energy.Eachchemotreatmentmadememildlyillforafewdaysandtwitchyandirritable constantly.Thehormonesinducedatruemalemenopause–weightgain,hotflashes, moodiness,lostlibido,wreckedskin,fatigue,whichlastedthreeyears.Thecombinationof treatmentsleftmewithmild,butlong‐termdigestivecomplicationsandaconcernabout possiblefurthernegativeeffectsdowntheline,becauseoftheradiationexposure. Iwouldn’tchangeathing.Ihatethetreatmentssideeffects.Buteverythingtellsme that,givenmycondition,asdemonstratedduringsurgeryandfollow‐uptests,mycancer wasseriousandaggressive.Ifithadn’tbeencaughtwhenIwas59,itishighlylikelythatit wouldhavespread,mademeveryillandsubstantiallyshortenedmylife. Iamnow64yearsold,andthismonthIgobackformyfiveyearfollow‐uptests. Everyreportsofarhasbeenclean–undetectablePSA.Ihope,andexpect,thatthisone willbethesame.Ifitis,wewillquietlycelebrate.IrelishthetimeIhavenow,andplanto keeponhaving,withmywife,oursonsandmynewgrandchild.Ifthetestdoesindicatea recurringcancer,wewilltalk,researchandthink,andthendecidewhatisbesttodo. ApositivePSAtestdidnotmakemeundergoanyoftheseproceduresor treatments.I,mywife,myfamily,mydoctorstalked,thoughtandmadedecisionsthat seemedrightforme.Iweighedanddecidedtotaketherisksassociatedwitheachtestand intervention.Icannotbesurethatmycancerwouldhavespread,justasIcannotbesure thatitwillneverrecur.ButthefirstPSAresultgavemeinformationthatstartedmeonthe decisiontrack. ItappearsclearfromrecentresearchthatPSAdataisfarfromperfect.Itcannottell whethertheelevatednumbersareanormalhighoratruesignofpathology.Itcannottell whetheracanceritdoesreflectsisfastorslowgrowing,orjusthowaggressiveitmay Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page22 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. become.Butwithoutthetest,Ineverwouldhavestarteddownthepaththatfoundmy fairlydangerouscancerandgaveme,whatIbelieve,ismybestshotatalonger,healthier, happierlife. IknowthattherearenumerousfalsepositivesonPSA(andmaybefalsenegatives), andthatevenafollow‐upbiopsycanresultincomplications.ButthePSAisjustanumber, notamandate.Thetestgivesthepatient,hisfamily,hisdoctors,information,limited thoughitmaybe,andthefreedomtomakeadecision.Lackofthatnumberjustleavesus inthedark. Weneedmuchbettertests,andbetterwaystousethePSAandotherteststhatwe currentlyhave.Butuntilwedo,IwanttheopportunitytofindoutmyPSAandmakemy owndecisionastowhatisnext.Iwantmysonstohavethatsamechoiceaswell. David Inlate2010,baseduponhigherthannormalPSAnumbers,myfamilyphysician suggestedImeetwithaUrologist.FurthertestingbymyUrologistledtoabiopsyinearly March…anon‐toopleasantexperiencewithagreatdealofpain,swelling,andavisittothe emergencyroom,catheterplacementfortwodaysandbloodinmyurineforseveral weeks. OnApril1st,2011,IwasdiagnosedwithProstateCancer. Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page23 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. Asarelativelyyoungmaninmyearly50’s,youcanimaginethatIwasquite devastated. MenofALLagesovertheageof49,untilabettermethodisfound,GETYOURPSA TESTANNUALLY.Andifyouarediagnosed,doyourresearch.Meetwithmultiple urologistsandradiationoncologiststodeterminethebestcourseoftreatmentforyou. Kathie IfullyagreethatthePSAtestisfarfromperfectbutrightnowit’sthebestearly indicatoravailable.HadmyhusbandhadaPSAdonewewouldnodoubtstillhavehim withusbutunfortunatelythatisnotthecase.IfIcouldhavehimbackwithimpotenceand incontinenceIwouldbethrilled.Mynephewandmybrother‐in‐lawbothhadearly detectionfollowedbysurgeryandIknowtheirfamiliesarebeyondgratefulfortesting. Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page24 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. Paulie Mydadsurvivedprostatecancerinthe1970's.Let’sjustsaythetreatmenthas changedradicallysincethen.MymomsurvivedbreastcancertwicesoIknewmy“cancer clock”wasticking.MyelevatedPSAin2010requiredabiopsy,whichfoundlocalized cancer.Afteraradicalprostatectomy,follow‐upPSA’sshownoreoccurrence. SoifIdidn’thavethePSAresults,Iwouldn’thavehadthebiopsyandIwouldn’t havedetectedthecancerandI’dbewalkingaroundwithcancertoday,ignorantbut hardlyblissful. NowI’mahappygrandpaof3withonemorecominginDecember.ThankstoPSA testing,Ihaveachancetowatchthemgrowup. John IhadmyroutinephysicalinSeptember2007.Aspartofthebloodworkup,aPSA wasdoneandtheresultscamebackhigh.After30daysofantibioticstoruleoutinfection, thelevelincreased.Iwasreferredtoaurologist.Onceestablishedattheurologist,a biopsywasdone.9of2corescamebackpositivewithaGleasonscoreof(4+3)=7.Being young,Ioptedforaprostatectomy.ThepostopresultsconfirmedtheGleasonscoreand thetumorinvolved60%oftheprostate.Iamnearlyfullyrecoveredat7monthspostop. ThePSA,inmyopinion,savedmylife,andjustonelifesavedisreasonenoughto encouragetesting. Everett In2005attheageof52,IdecidedtoaskforaPSAtestasInoticedthatIwas havingacoupleofthesymptomsthatJoewaswritingabout.ThePSAtestcamebackwith aGleasonscoreof8.0andIimmediatelyhaveaBiopsywhichcamebackwith8of12 sampleswithapositivereading.IimmediatelyafterspeakingwithmyUrologisthad SurgerytoremovetheProstateandhereIamCancerfreetoday. IstillhavePSAtestsannuallytoendurethattheCancerhasnotreturned.Acouple ofyearsagomy44yearoldbrotheralsowasdiagnosedwithProstateCancerafteraPSA testandalsoisCancerFree.ItwouldbeashametodoawaywiththePSAtest.Iwould highlyrecommendittoanymaleover50orearlieriftherehasbeenahistoryofitinyour family. Anonymous Iwasdiagnosedwithprostatecancerattheageof46.Thediseasewasalreadyin thelymphnodesbesidetheprostatewhenIwastohavesurgery.AnearlierPSAscreening mighthavesavemefromstrugglingwithdiseaseforthelast20years. Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page25 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. Paul IwastotallyshockedwhenIfoundoutthatIhadbeendiagnosedwithprostate [email protected],butthePSAwasincreasingatdouble thenormalrate.Aninitialphysicalexamdidnotshowanyswellingorabnormalities.On thebiopsies2/10showedcancer.Sincemycancerwasaggressive,Ihadaradical prostatectomy.Thebiopsyoftheremovedprostatehadshownthecancertobeconfined totheprostate.Surroundingtissueshadnotshownanycancer. Over2yearslaterIamcancerfree.IhavehadnoincontinenceproblemsbutIstill haveaproblemgettinganerection.MyurologistandIareworkingonthisproblemand therearesolutionsforthisproblem.I’mgratefulthecancerwasremoved.Prostatecancer issoprevalenttoday,thatscreeningisamust. Paula Myhusbandisactivedutymilitaryandhewasscheduledforhisannualphysical whenaco‐workersuggestedheaskforaPSAtest.Myhusbandwas38yearsoldandhad notexperiencedanysymptomsofprostatecancersoweknowitwasdivineintervention becausemyhusbandlistenedtohisco‐worker’ssuggestion.HeaskedforaPSAtestnotat allexpectingtheresultswouldhaveanymajorfindingssowhenthedoctortoldhimhis PSAlevelwas4.6wewereshocked.Hewasreferredtoaurologistwhowithina3week timeframeretestedhisPSAwhichwasnow4.8.Theurologistputhimonantibioticsto ruleoutaninfection. Afteranother3weeksandantibioticshisPSAwastakenagainwithnochange.The urologistscheduledhimforabiopsies.Theresultsofthe14samplesshowedcancerin12 withaGleasonscoreof6.InMarch2011,myhusbandhadhisprostateremovedby roboticsurgery.TwoPSAtestslaterandhisPSAisZERO! John Ineedtotellmystory.Iamahealthy50‐year‐oldguywithawonderfulwifeand twokidsages6and8.IalsohaveagreatjobasabuilderinSouthDakota.Lifeisgood, thingsaregoinggreat,orsoIthought. IwasdiagnosedwithmetastaticprostatecancerinlateAugust2010.Mywholelife changed!IfeelasthoughIhaveanewpurposeinlife,thatnewpurposeistoeducate everyguyoutthereaboutprostatecancer,whatitis,whyit’simportanttobechecked everycoupleofyearsuptoage45,theneveryyearafterthat,andhowtoavoidgetting thiscancer. Mywifesays,“Johnhascancer,butcancerdoesn’thavehim.” ThePSAtesthelpeddiagnoseProstateCancerinme.Forthreeyearsmydoctorsdidnot doaPSAtestsothecancergrewandspread.OnceaPSAtestwasfinallydoneitconfirmed Ihadprostatecancer.APSAof1770thistestissoimportanttoallmen. Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page26 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. Anonymous Afterhitting50yearsoldIstartedgettingPSAtests.At53myPSAstartedto rapidlyrise.DoctororderfurthertestsandProstateCancerwasconfirmed.Iwasoperated onandhavebeenCancerfreeforover10years.ThetestshelpsavemylifeandIamvery thankfultheywereavailable. Althoughtherearesideeffects,theyarebetterthanbeingdeadinmy50’s.Ibelieve PSAtestingistomenwhatbreastcancerscreeningsaretowomen. Sandra Menhavearighttoknowwhatishappeningwithintheirbodyandthentomake informeddecisions.ItiscondescendingtosaythatyouwanttoeliminatePSAtesting becauseoftheproblemofovertreatment.Itisourjobasadvocatestoseethatmenand theirphysicianshavethebestinformationavailablesotheycandecideonthebestcourse forthemselves. MyhusbandelectedActiveSurveillance(thenknownaswatchfulwaiting)and whenafterafewyearshisnumberssuddenlybegantorisehemadethedecisiontooptfor surgery.Though73atthetimeofhistreatment,hisDadhadlivedto94andIthinkthat sometimesweforgetthatmenlivelongerlivesthanwhatwasexpectedyearsagoand havearighttoavoidthehorribledeathofprostatecancer. Lee AfriendofminewasdiagnosedwithProstatecancerafterchanginghisinternist. Hispreviousonedidn’t“believe”inPSA’sbuthisnewoneinsistedonitandmyfriends PSAwasquitehigh. Meanwhilemywifeaskedme“what’syourPSA?”Myresponse(Iwas56yearsold, itwas1997)was“what’saPSA—andfurthermorewhatistheprostrate”.Ididn’teven knowhowtospellit(andIhadaPHDinbiomedicalengineering:–(.Anyhow,Iaskedmy Dr.whatmyPSAwas,hesaiditwasfind,butIhadn’tbeentestedfortwoyearssoIwent inandgotthePSAtest.Myinternistcalledme,sayingthatmyPSAhadrisenconsiderably andIshouldgotoaurologist.TheurologistdidareturnPSAafewweekslateranditwas stillabithigh(5.6ifIrecall). Hecouldn’tfindanythingwithaDREbutsuggestedthatIgetabiopsy.Ireadabit aboutprostatecancer,spoketoafewcolleaguesattheUniversitywhohadbeen diagnosedwithProstatecancer,anddecidedthelikelihoodofcomplicationsfromthe biopsy(whendonebyanexperiencedurologist)wasquitesmallandworththeriskof findingoutmoreaboutthestateofmyprostate.TheDr.calledmeandmywifein(a companionisamusttoheresomewhatcomplexandanxietyraisingreports)andtoldus thattherewasconsiderablymalignancyinseveraloftheCores—Ithinkthescorewas7. HesuggestedIconsiderthealternatives—surgery,radiation,watchfulwaiting andgavemearticlestoread.TheurologisttoldmethatIhadacoupleofmonthstodecide Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page27 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. whattodo,thattherewasnoreasontorushintoadecision.Ispentthenextcoupleof month’sreadingallIcould,lookingontheweb(therewasagreatsite—Iforgetthe name),speakingtopeople—thereweremoremenouttherethanIrealizedwhohad beentreated). Thatwas13yearsago,sofarsogood.Ihadarecuperationofafewmonths,my sexualprowessisn’tthesame,andIgettoseemygrandchildreneveryfewmonths.I RESENTthesestatisticianstwistingrealityandtellingusweshouldn’ttrytoknowwhat wecanfromaPSAtest.Theyhaveneverclaimedithasnovalue,andtheyarerightthatit canbe“misused”ifmenarefrightenedintoaprematuredecisionbasedonfear.ButI decisiontogowithignoranceandnohaveregularPSAscreeningisatleastasbadas jumpingintotreatmentwithoutcarefulconsideration.Wearenotnumberandwehavea fundamentalrightandobligationtoseekknowledgeanduseit. DoItrustallurologistsandtheirconclusions–NO—butonaverageItrusttheir approachandexperiencefarmorefromthekindofnumbercrunchersmakingupthese publichealthtaskforces. Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page28 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. Donna Myhusbandwasdiagnosedatage49withProstateCancer.Thecancerhadalready spreadtohislymphnodesandseminalvesicles.MyhusbandwasaVietnamVeteranand wasexposedtoAgentOrange. IfwedecreasePSAtesting,thenotherVietnamVeteranswilldowithoutVeteransbenefits forthemselvesandtheirfamilies. Somanymenresisttestingbasedonfearofsideeffectsoftreatment.Wedon’t needasystemthatwillincreasethatnumber. Myhusbanddiedatage64ofProstateCancer. Daniel IfitwerenotforthePSAtestIwouldhavePCstilltothisday.Icountmyselfvery luckyandblessedthatIcanbecalledasurvivor.Earlyin2011Ihadfinallydecidedtosee myfamilyDr.aboutmyneedtourinateseveraltimesanight.Ifiguredthatitwasduetoa strictureinmyurethra,somethingthatIhadbeendiagnosedwithmanyyearsago.Of courseIwaswrong;insteadmyfamilyDr.saysIthinkyouprobablyhaveanenlarged prostate.SohesetsmeupforaPSAtestandafollowupexam.SoIgogetmybloodtest andjustfigureheyI’m49anenlargedprostateisnobigdealtheygotpillstofixthat. AboutaweeklaterIseemyDr.andhetellsmemyPSAis3.7whicharenotcritical andmostlikelynotabigdealbutrefersmetoaUrologist.SoIgotoseetheUrologistwe talkaboutmysymptomsthenhedoesadigitalexamwhichhesayseverythingfeels normal.HetellsmethathewouldlikemetogetafragmentedPSAtestandexplainstome thatitismorein‐depthandwillgivehimabetterideaofwhatisgoingon. AgainIgoalongmymerrywaythinkingallisgoodandwon’tbelongtillIgetsome pillstoshrinkmyprostateandIwillbeabletosleepthroughthenight.Igobacktothe UrologistandhesaysIhavesomebadnewsyouhavea50/50chanceofhavingPC. NeedlesstosaythisshakesmeupalittlebutIstillthinkthingswillbefineheneverfelt anyabnormalitiesonthedigitalexam. SoIgetscheduledforthebiopsyandgobackforthefollowup.Againhetellsmehe hassomebadnewsformeitisconfirmedIhavePC.Iatthispointaminshock,howcome thedigitalexamneverindicatedaproblem.Iendeduphavingmyprostateremovedin Juneofthisyearandmy3monthPSAcameback0.IamafirmbelieverinthePSAtest.I hatetothinkhowlongwouldithavetakenandwhenitwasdiscoveredwouldithave spread.IknowthatfromthetimemyurologisttoldmethatIhada50%chanceofPCtill hetoldmeIwasPCfreewassomeofthemostagonizingmonthsofmineandmyfamily’s life. Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page29 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. Rudy ArisingPSAnumber–from4.8to5.6–overthecourseofayearledtoabiopsyin 2005andafindingofprostatecancer.Ihadsurgery:Gleasonscorewas7(3+4),witha cancercellonthemargin.ThePSAtestsavedmylife.Ihadnosymptoms.Thetestalso savedthelifeofmyfatherandtwobrothers,alldiagnosedwithprostatecancerwithno symptoms.Myfather,diagnosedin1981underwentradiationtreatmentandisstillalive todayattheageof87. Anonymous TodayIamprostatecancerfree.ButonlybecauseaPSAtestrevealeditsattack veryearly.AboyhoodfriendhadhisPSAtesttoolate;heisnowdead.Weare/wereinour late70s.DidthestudygroupdeterminewhatpercentageofmenwhohadPSAtestingand discoveredthediseaseearly,diedanyway?Whatpercentagelivedalongerlife?Thisisnot thewaytoreducehealthcosts!!!IencouragealltoarguestronglyinfavorofPSAtesting withtheirphysician Bryan IfnotforthefactthatIhadaPSAtestatage46,Iwouldbebeyondthepointofno returnnowattheageof50.IhadnosymptomsorsignsofProstateCanceratthetime.As aresultofthePSAtest.ItwasdeterminedthatIhadProstateCancer.Thecancerhad leachedoutoftheprostate.AtthattimeIhadsurgerytoremovetheprostateandalsohad hormoneandradiationinthe3yearsfollowingthat.WenttomydoctoronOct.,2011.As ofrightnow,Iamcancerfree.IthinkthePSAisavitaltoolinearlydetectionofProstate Cancer. Paul PSAtestingsavedmefromprostatecancerhurtingmyotherorgans.Ihadnoother symptomsexceptforthisabnormalriseinmyannualPSAscore.Inturn,thePSAtesting ledmetoprostatecoresamplingwhichdiagnosedthecancerandallowedmetobe successfullytreated. Ifyouwonder,wouldIhavesurgeryagainhavinghadtheexpectedreductionin potency?Absolutely!Itcomesdowntohavingahealthynormalliferatherthandying fromanundiagnosedcancer. NowfeelinghealthyagainthePSAtestismyonesourcetolearnifthecancerisin‐ check.Anescalatedscoreformewithoutaprostatewouldindicatefloatingremainsof prostatecells–perhapscellsthatareaffectingotherorgans.Inall,thePSAtestmeans security—securityinknowingI‘dhaveotheroptionsifmynumbersspike. ManyofthearticlesIhavereadagainstPSAtestingfailtoacknowledgethe following: a)ThePSAtestistheonlyprostatehealthindicatorwehaveatthisjunctureandtestingis notinvasive. Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page30 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. b)AnabnormalPSAscoredoesnotleadautomaticallytotreatment–abiopsyconfirmsor refutesthepresenceofcancer.Inmycasethebiopsyshowedcancergrowths(andlater thesurgeryshowedthecancertobeevenmorepervasivethantheinitialbiopsy). c)ThePSAonlyprovidesthepatientwithaseriesofoptionstowhichheismedically entitled;itdoesnotmandatesurgeryorradiation.Inmycase–aswellasthemajorityof myprostatecancersurvivorpeers—theoptionswereclearlyexplainedforbothtreatment andfornon‐treatment(activesurveillancebeingamongtheviableprotocolstoconsider). NoonepathwasimposedinthecasesthatIknowpersonally. d)AndPost‐surgery,PSAchecksaretheonlylitmustesttofindifthecancerisin‐checkor metastasizing.Againifthecancercontinuestogrow,thephysiciangivesusoptions. InsteadofeliminatingPSAtestingcoveragewhynotincreaseawarenessandeducation regardingprostatecancer? Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page31 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. Louise MydadhadPSAtestreadinghighsosenthospital.Consultantperformedbiopsy resultson12thOct2011cancer!Thistestcontributed2loudalarmbellsforourGP.Dad iscurrentlywaitingfortheresultsofaMRI,then,possibletreatment.Allfamilyshocked andnumbbutpositiveonoutlook.Prostatecancertestingisamust! Anonymous Duetoearlydetectioninmymidsixties’,followingannualPSAtests,myprostate cancerwasdetectedatanearlystageand,usingbrachytherapy,thecancerwasdealtwith beforerealharmcouldbedone. MyannualPSA’sshowthat,after6years,therehasbeennorecurrenceofcancer. Kelly IwashavingmyPSAcheckedannually.Foryearsitremainedaround1.0,thenone yearitjumpedto2.9.MyUrologistdidabiopsyanditcamebackpositiveforcancer.My Gleasonscorewas6witha3+3.HadInotbeenreceivingregularPSAexamsmycancer wouldhavebeenmissed.A2.9scoreisnotunusualfora55yearold.Havingahistoryof myPSAscoresformydoctortouseasatooltodecidetobiopsyornotsavedmylife, Steve Iwas53whenIwasdiagnosedwithPC.IwaswithoutsymptomsandifthePSA testwasn’tthereIwouldn’tbeheretoday. Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page32 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. Kathy Hi,mynameisKathyandmyfather,73yrs.youngnow,hasprostatecancer.He wasdiagnosed3yrs.agow/metastaticprostatecancer.HisdoctordidaPSAtestandit was4or6.Hisdoctorneverpushedtohaveitfurtherinvestigatedbecausehethoughtit wasok,myfatherwasolderanddidn’tseemconcerned. BUTitwasaconcern.Twoyrs.laterhewashavingproblemswithhisback,and eventuallyfoundithadspreadtohisspine(vertebrae).Weallthoughtthathisbackwas justactingupagain.Wewereallsowrong.HisPSAhadgoneto94. Ifhisdoctorwould’vepushedandsaiditwasabigdealandstateditshouldbe lower…..itwould’vebeenfoundearlyandneverwould’vemetastasizedtohisspine.PSA testingisallwehavecurrentlytohelpdetectprostatecancerearly,ITISIMPORTANT!!!I lookatnewresearchcontinuallytotryandfindnewtreatmentsthatmaycuremydad beforeit’stoolate.Heisthemostwonderfulgivingandfair,honestmanIhaveevermet. SomanyknowandlovehimandIsharehisnameDADbecausesomanydon’thave adadlikehim.IwishIcouldcomehomefromworkforthenext10‐20yrs.tohaveabeer withmyDadbutIamsureourtimewillbeshortenedbecausethisdoctordidn’tpushhis PSAresults. Charo In1999,whenIwas54yearsold,IhadaPSAtestcompletelyonmy owninitiativeatalabthatdidn’trequireadoctor’sorder.Hadthe bloodtestdonebecauseaclosefriendhadjusthadaprostatectomy forprostatecancer. MyPSAwas13.Tookthetestresultstomyfamilydoctorwhodida DREandreferredmetoalocalurologist.Hadapalpablenoduleon theleftside.Firstbiopsywasnegative.Sixmonthslatersecond biopsywasGleason3+4=7. ImaginewhereIwouldbetodaywithouthavinghadthePSAtestdoneat 54yearsofagein1999withthecanceronthevergeofescapingthe prostatecapsuleshell. Alsoimagineifthecancerhadbeendiscoveredearlierhowmuchbetter myerectilefunctionwouldbewithtwosetsofnervebundlesspared insteadofonlyone. Anonymous NineyearsagoIwasdiagnosedwithprostatecancerandchoselaparoscopic surgerytoremoveit.Imayhavechosenanothertreatment,asIlookback,giventheafter‐ effectsofsurgery,butIamfreeofcancerasaresult.WithoutthePSAtestandbiopsy,I wouldnothaveknown. Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page33 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. Myfather‐in‐lawdiedofprostatecancerduetothefactthathisdoctornevertested forit.Howmanyothershavehadthesamefate? Iamasurvivorbecauseofit. Don In2004,IhadsomeofPSAteststhatshowedthelevelrosefromabaselineof about2.0to3.5to4.8inthespaceof8months.Ihadabiopsydonebyaurologistandthe resultwasthatseveralcoreshadaGleasonscoreof3+4.Ielectedtobetreated.Without thePSAtests,Iwouldnothaveknownofthepresenceoftumors. Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page34 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. Bob Ifeelveryfortunatethatmyfamilydoctor,uponseeingmyPSAresults,referred metoanexcellenturologistforfurthertestingandconsultation.Afterlongdiscussions doctors,friends,andfamilyIdecidedtohavearadicalprostatectomy.Iwas51yearsold andIdidnotwanttoriskhavingthecancerspread.Mytestsinthefouryearssincehave beenexcellent,andshouldthecancereverrecurIknowIstilldidtherightthing. Roy MyfatherdevelopedprostatecancerbeforetheinstitutionofPSAscreening. Thereforehehadthediseaseanddidn’trealizeit.Itwasn’tuntilhehadafallandx‐raysof hishipindicatedthathehaddevelopedprostatebonecancer.Irememberseeingthosex‐ raysandthepainthatIfelt. Iwatchedmydadbeingconsumedbythediseaseforapprox.8months.I remember,towardstheendofhislife,prayingthatthegoodLordwouldtakehimand relievehimofhispain.InmyheartiffeelthatifPSAscreeninghadbeenavailable,the diseasewouldhavebeendetectedandIwouldhavehadmydadwithmeafewmoreyears andhewouldnothavehadtohavegonethroughthepainthathedid. Ihaverecentlybeendiagnosedwithprostatecancerandaminmy4thweekof beamedradiationtreatment.IfeelfortunatethatIhadthePSAscreeningavailable. Withoutitmyurologistwouldnothavesuspectedcancer,Ididnotexhibitanysymptoms, Ifeltgood.Historycouldhaverepeateditself.ThankyouPSAscreening.Itmayhavesaved alotofheartache. Leo MyprostatecancerwasdetectedbyaPSAtestinAugust,2008.Ihavehadfour biopsiessincethen,anditthankfullyhasnotprogressedsincethen.WhileIdobelievein thetest,Ialsoknowthatsomanyoutsidefactorscaninfluencethenumbers(sexual activity,bikeriding,andinfectionsfromabiopsy).Myadvicewouldbenottotakea suddenriseinthePSAresultsasaclearindicationthatthecancerisspreading,butuntil anothermoreaccuratetestcomesalong,thisiswhatwehave. Jim IhadaPSAcountof10.OneyearlaterIwas10.1.Ithendecidedtogetabiopsy done.Ihadnosymptoms.Ifeltgreat.ButthedoctortoldmeIhadcancer.MyGleason scorewas7.Afterspeakingwiththemandreviewingmybiopsy,theysaidifIdonothing, mylifeexpectancywouldbe5to8years.Ichosetogetoperatedon.Ithasnowbeenover 10years.MyPSAisnow0. Ifeelthetestsavedmylife. Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page35 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. Anonymous MyfatherwasdiagnosedwithprostatecancerusingaPSAtest.Hedidnothave signsorsymptomsthatwouldhavepromptedtestingifitwasnotroutine.Tothebestof myknowledgehehadneverheardofprostatecancer,hesimplyaskedthedoctortodo “whateverisrecommendedforaguymyage.”(Late50satthetime).HisPSAwas elevated.Subsequenttestsshowedthatwhenhewasdiagnosed,thecancerwas aggressiveandhadalreadyadvanced. Withcuttingedgecarehesurvivedthediseaseforanotherfiveandahalfyears.For theseyears,IamforeverthankfulandIfirmlyassertthattheseyearsweremadepossible byaPSAtestthatpromptedthediagnosisandallowedhimtoobtainthetreatmentsthat prolongedhislife. WhileIunderstandthatwehavealongwaytogoinunderstandingthis disease,inimprovingdiagnosticprocedures,educatingprovidersandpatientsabouttheir options,andultimatelyadvancingtreatmentandprevention,withoutPSAtestingthereis noothermechanismforearlydetectionofprostatecancersaveaDREwhichcanalsobe Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page36 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. subjecttoerror.Weneedbothtoolsofdetectionatthistimeuntilbettermeasures becomeavailable.Weneedtodoeverythingwecantomakesurethatmenhaveachance tofightthedisease.AccesstothePSAtestispartofthat. IamthankfulthatmydadhadthePSAtest.Ibelieveitultimatelyenabledhimto choosetreatmentsthatextendedhislife.Iwishthesameforothermenwhomayfacethis disease. James InMarchof1994,myPSAreading,whilestillwithinthe“normal”range,continued toshowariseinthreeconsecutivechecks,eachlessthan6monthsapart.Myurologist suggestedabiopsy….notsomethingonewantstodo,butIagreed.Thesamplescameback positiveforprostatecancer. Also,aGleasonscoreof4‐5accompaniedtheresults.Conferringwiththeurologist andgettingasecondopinion,Ihadchoices:surgery,orwatchfulwaiting.Itdidnottake melongtorealizethatIwouldhavethesurgery.IhadthesurgeryinMayof1994.Side effectswereminimalandofshortduration. Watchingovermyhealthinsubsequentyears,myPSAonceagainshowedaslight increase14yearsaftertheoriginalsurgery.“Activity’wasdetectedintheprostatebed.I choseatthistimetodoconformalradiationtotheprostatebed.Again,Ihavenoside effectsandamenjoyinglife. InallofthiscontroversyoverPSAtesting,Iamofferingthisopinion:withoutPSA testing,Iwouldnothavebeendiagnosednotonlywithprostatecancer,butonewitha Gleasonscorethatindicatedamoreaggressivecancer. David ThePSAtestisthebestthingwehavetodaytofindcancerinitsearlystages.Ihave threefriendsthathavebenefitedfromthistesttocatchitearly.Formeandmydoctorit developsanearlybaselinesoaspikewillbedetectedandwecanaddresstheproblems earlyandsavemylife. John Iwas64whenmyPSAcaughtmyattentionbybouncingupanddown(itwasn’t highbutitmorethandoubledin7months).Ihadnosymptoms,andtherewasno palpabletumor.BasedonthePSAresults,Idecidedtogetabiopsy,anditshowedcancer in7ofthe12zones(Gleason7).Ichosetohavearadicalprostatectomy,andsofar(two andahalfyearslater)there’snosignofthecancercomingback. IfIhadn’toriginallyhadthePSAdata,thatcancerwouldstillbegrowinginsideme, andI’dhavenoideaitwasthereuntilitgotmuchworse.AndifIweren’tmonitoringPSA Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page37 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. now,I’dhavenoideaifthecancershowsupagain,alertingmetotheneedforfurther treatment. IknowthePSAtestisn’tasreliableaswe’dalllike,butit’sallwehave.It’sfoolish toignorethevalueofthistest. JamesB. MyPSAwaselevatedandelectedtohaveabiopsyperformed.Mybiopsywas positiveforadenocarcinoma,soIhadaprostatectomyperformed.Iwasfortunatetofind thecanceratearlieststages,soitwascontainedwithintheprostate. Idon’tknowhowtheycansaythatthistestisn’tusefulindetectingcancer.IfI wasn’ttestedwithaPSA,Iwouldhavehadtowaituntilmycancergrewenoughwhere theMDcouldfeelanabnormalityduringarectalexam.Ifthatweretohappen,then there’sagreatpossibilityitcouldhavespreadtootherareasofthebody.Iftheytakethe PSAtestaway…you’regoingtoseeariseinmorbidityandmortality. Lawrence Ihavehadprostatecancerfor12years.Ijustuseherbstoslowthegrowthofthe cancer.PSAhasonlydoubledoncein12years.WhenIstoppedusingtheherbs,thePSA goesuponepointamonth.IfIdidn’thaveaPSAtest,Ineverwouldhaveknown,untiltoo late,andsurgeryorchemotherapywouldhavebeenmyonlydefenseanditwouldhave beentoolate.MyPSAisnowat16.7.Iam65yearsold Anonymous PSAtestingsavedmylife.In1994,theinsurancecarrierIhaddidnotapproveof prescreeningforcancer.NoPSAalthoughdigitalrectalweredone,andnomammograms. WhenIchangedinsurancecarriers,Ialsochangeddoctors(PCP)andheindicatedmy prostatewasenlarged,orderedaPSAtest,whichcamebackat20,sentmetoaurologist. Afterthebiopsytheyfoundcancer,fairlyaggressiveatage50.17yearslater,and radiation,clinicaltrialsetc.,I’mstillhere,butIstillhaveprostatecancer.PSAistheonly definitivewayoftrackingmycancernowsinceIdon’thaveaprostate.IfPSA’sare abnormal,severalneedtobedoneoveraperiodoftimetoseetheriseratebefore consideringinitialtreatment. Lotsoffactorscomeintoplay,includingageofpatient,historyofPCainfamily, initialPSAresult;evenabaselineatage35wouldbegoodtorefertoetc.etc. William MydoctornoticedasteadyriseofmyPSAlevelsandorderedabiopsy.Ididnot haveanyphysicalsymptomsthatindicatedanythingwaswrong.Atage46Iwas Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page38 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. diagnosedwithprostatecancerandelectedtohaveradiationtreatments.IfIwasnot testedthecancerwouldhavespreadbeyondtheprostatebeforesymptomsappearedand mychancesforsurvivalwouldhavebeengreatlydiminished.AllIcansayisthatby havingthePSAtestIhaveasecondchance. Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page39 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. Robert Iam55yearsoldmanthatwasdiagnosedwithprostatecancerinOct2009.Itwas thruPSAscreeningstartingin2008thatshowedmyPSAlevelsrising.Mydoctorwas alarmedenoughintheraisefrom1to4inoneyear’stime,thatherecommendedabiopsy. AbiopsyrevealedthatIhadcancerinover30%ofmyprostate.Afterconsultationwith myurologistIagreedthatanaggressiveapproachwasneeded.Ichosetoundergoa prostateremovalsurgery.Afterthesurgeryitwasfoundthatactuallythecancerwasin over70%ofmyprostateandatthemargins. Itwasgettingreadytospreadwithoutanysymptoms.Ifitspreaditwould probablyleadtobonecancer.AyearlateranotherroundofPSAtestsshowedatumorhad developedinmyprostatebed.Radiationwasnecessary.Iamnowoneyearcancerfree thankstoPSAtestsandmydoctors. David MycanceroftheprostatewasfoundasaslightelevationinmyPSA.Thedoctor thendidabiopsyandfoundthatIwasintheveryearlystages.Iwasrightat50yearsold. MydoctorandIelectedtototallyremovetheprostate.Ihavebeencancerfreeforthe past10yearsthankstothePSAtest. Yost Iwas43yearsoldwhenahighPSAresulttippedmydoctortothepossibilityof prostatecancer.AfterappropriateinvestigationIhadabiopsythatconfirmedadvanced prostatecancer.ThePSAtestsetmeonacourseofsurvival.MypartnerandIarethankful fortheearlyPSAtest. Mike IconsiderPSAtestingaveryimportanttoolinthefightagainstprostatecancer. AlthoughIwouldagreethatabetterdiagnostictechniqueisneeded,untiloneis developedtheuseofPSAtestingandbiopsywhencancerissuspectedisalifesaver. Diligentapplicationofthistechniquebymyurologistdiscoveredmyprostatecancer elevenyearsagoatage56.Choosingaradicalprostatectomy,despitethepotentialquality ofliferisksitposed,isadecisionmywifeandIhaveneversecondguessedandamhappy toreportIhavebeencancerfreeeversince. Thebaddecisionwouldhavebeentoignoremyurologist’sadvicetohavePSA testingdonebecauseIwouldnoweitherbedeadorfacingmuchmoreaggressiveand qualityoflifelimitingtherapytotreatadvancedstageprostatecancer.Ihopeabetter techniqueofdetectionandstagingwillsoonbedevelopedbutuntilthattimedon’tgive mentheoptionofignoringtheirprostatehealth. Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page40 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. David IthoughtIwasjustgettingthe“oldman”syndrome.Iwouldwakeupinthemiddle ofthenight,sometimesmorethanonce,togopee.Othertimes,theurgetopeewasso strong;IthoughtImightnotmakeittothebathroomintime.WhenItoldmygeneral practitionerdoctoraboutthis,hetoldmetogoseeaurologist.Iwasnotexcitedabout seeinganotherdoctor.Icontemplatedputtingitoff.IamgladthatIfollowedthroughwith theappointment.WhenItoldtheurologistthesamething,hetoldmetogetthebloodtest forPSA.Ihadnothadonebefore,sothiswasthefirstone.Itcameinat5.Myurologist thendidaDREandfeltsomefirmnessintheprostate.Hethensuggestedthebiopsy.Iwas 52atthetimeandagreedtothebiopsy. Thebiopsywentwellwithnocomplications.Iwentbackaweeklaterforthe verdict.HetoldmeIhadprostatecancerandthatmyGleasonscorewas7(3+4).Hethen gavemesomehomeworktodobyhandingmealargepackageofinformation.Ielectedto havemyprostateremovedusingR.A.L.P.Threemonthsaftermysurgery,myPSAiszero. WhenitcomestothePSA,Ithinkitisessential.Itistooeasytorationalizeurinary problemsaway.Inaddition,PSAisnotthewholestory. TherearemanymenwhosePSAislow,yettheyhaveprostatecancer.Iknowa manlikethatwhohasafamilyhistoryofprostatecancer.Also,takecontrolofyourown destinybydoingtheresearchaboutallofthetreatmentsavailableandwhattheside effectsare.Theyareprincipallyincontinenceandimpotence.Donotletyourdoctor bulldozeyouintoaparticulartreatmentplan.Beyourownmanandmakeyourown decisionsthatyoucanlivewith.Besurethatyoufindaurologistthatiswillingtotalk aboutincontinenceandimpotenceandiswillingtoworkwithyoutogetbothofthose functionsback. Thelastthingyouwanttoexperienceisregretoveryourdecisionbecauseofalack ofinformation.Everybodyreactstothediagnosisofprostatecancerdifferently.Ifyou havebeenrecentlydiagnosedandhaveheardthedreadedword“cancer”,Iurgeyouto joinaProstateCancerSupportGroupinyourarea. Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page41 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. Guy Ihadsurgeryover2yearsagoandneedtogetPSAtestsevery6monthstomonitor thecancer.Recently,thetestsshowedanincreaseinPSAfrom0.0,meaningapossible recurrence.It’stheonlynon‐intrusivemethodcurrentlyavailabletocheckonthecancer’s progress. Anonymous IstartedgettingPSA’sinmylate30'sabout1timeayear.After45mydir.would orderthemmoreoftenduetomyfamilyhistory.Ilostseveralunclestoprostatecancer. FatheralsohadPC,buteventuallydiedfromColorectalCancer. MyPSAwasnotveryhighusuallyunder3.0formanyyears,andthenwentto4.8. MyinternalmedDir.sentmebacktoUrologist,Urologiststarteddoingbiopsies,butthere wasnocancer,evenafter3subsequentbios’.Thenin2007,PSAspikedagain,another biopsy,nosurecancer,butcellsthatlooked“worrisome,”accordingtomyUrologist.In Europe,thecellswouldbeconsideredcancer,butnotintheStates. Anyway,hewantedtodoanotherbio,hedid(9monthslater),andfoundcancer cells.AllofthetestsweredrivenbythePSAtest.Ihadnopain,nosymptomsandno apparentproblemsuntilthebiopsiesstarted. EventhoughIamOKnow,IalwayswonderediftherepeatedBiopsiesmayhave acceleratedwhatmayhavebeenaslowgrowingcancer.Ididhavearadical prostatectomyandsofarrelativelyfewsideeffects4yearspost‐surgery. NotsureIormyDr.’swouldhavecaughtthishaditnotbeenforthePSAtest. Again,Ihadnosymptomsonlyafamilyhistory.Idofeellikethetestmayhavesavedmy life,atleastfromPC.Iwatched3familymembersdiefromPCanditisaterriblewaytogo justlikeanyothercancer. Anonymous Attheageof47IthoughtIwasaveryhealthyperson.Iwaswonderinghowmy cholesterollevelsweresoIhadsomeblooddrawnandtested.Thedoctorcalledmeafew dayslatertosaymyPSAhadgoneupfromaconstant1.0to4.25. AfewmonthslateraftermuchtestingIhadmyprostateremoved,itwasfoundtohavea tumorthatwasbranchingoutbothlobesandabouttobreachtheoutersurface. Itisnowover4yearslaterandstillcancerfree,IamsureifthePSAtestingdidnot flagthedoctorsthattherewasaproblemmycancerwouldhavespentelsewhere,because Ifeltwellandhadnoindicationsofanyproblems.NowIfollowwithmydoctorwithjusta simplePSAtesttoseethatIamstillcancerfree,itseemslikeaverycosteffectivewayto checkforareoccurrence. Eugene Whenprostatichyperplasiawasdiagnosedseveralyearsago,myurologistbegan testingmyPSAonaregularbasis.Overtheyears,myPSAkeptrisingtothepointwherea Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page42 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. biopsywasindicated.Fortunately,prostatecancerwasnotdetectedthen,butwas sometimelateraftertwofollow‐upbiopsies.Atthepointofdetection,myPSAhadrisento 14,andGleasonscorewas4+5,indicatinganadvancedstageofcancer.I’mconvincedthat ifIhadskippedannualPSAtesting,mycancerwouldhaveimplodedbeyondthepointof containment.Asitwas,mytreatmentoptionswerenowlimitedtoradiology,whichalong withADThaskeptthecancerincheck,sofar. Myonlyregretisthatmyurologistwaitedtoolongtoreachaconfirmeddiagnosis. Inretrospect,itwouldhavebeenwisertostartanaggressiveregimenunderdirectionof anoncologistwithaspecializationinprostatecancer.Sadly,formeitwastoolate,too smart. William IhavelostmanygoodfriendstoProstateCancerbecauseitwasfoundtoolate.The PSAtestsavedmylifebyprovidingearlydetectionandallowingmetohaveProton radiation.Forthepast7yearsmyPSAhasbeenabout0.2ng/ml. IconsiderPSAagoodlowcostandsimplescreeningtoolforDoctorstoprovide earlydetectionofapossibleProstateCancer. Mary Myhusband’sbrotherwasdiagnosedwithProstateCanceratage48;Mikewas45 atthetime.WetoldhisprimarydoctorandweaskedifhecouldpleasedoaPSAtest.The insurancecompanywasnothappyaboutthePSA,eventhoughhehasotherbloodtests everythreemonthsfordiabetesandheartdisease). In2008,hewashospitalizedfordehydrationandhisurologistcameintheroom andtoldusthatmyhusband’sPSAwas4.7,almostdoubledfrom2.4thepreviousyear. Thedoctoremphasizedthattheremightnotbeanythingwrongbuthewantedhimtogo totheofficethefollowingweektotalkaboutthis.TheDREwasnegativeandthedoctor suggestedanotherPSA.ThenextPSAwas4.87,soabiopsywasscheduled. AbiopsywasdoneinSeptember,thesamedayhisalmost81yearolddadhad surgery.AtthatpointhisPSAwas5.5.Thisbiopsywasnegative.DecemberPSAwasalso 5.5,sowedecidedonretestingin3monthsandthen6months.NoBPH,noinfections,etc. soreallynootherreasonfortheincreasingPSA.PSAwentto6.2andthenbackto5.5,May 27,2009;thedoctortoldushefelta“smallhardened”areaontheDRE.Hesuggested anotherbiopsy. ThesecondbiopsywasdoneonJune2009andtheurologistappointmentwasJune 17,2009.ThistimetwooftensitesshowedcancerwithaGleasonof6.Mikewantedto havesurgeryifpossiblebecauseofhisage,atthatpoint58,almost59andothermedical concerns(diabetes,angioplasty),sohewasscheduledforanMRIandbonescan. AllthewheelsweresetinmotiononJuly;hiscardiologistgavepermissionforsurgery tentativelyuntilafterastresstest.HewasthenscheduledforsurgeryonAugust2009. Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page43 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. Thesurgerywentwellandthefinalpathreportshowedaggressivecancer,though stillconfinedtotheprostate,butthroughouttheentireprostate.Gleasonof7.Hadwe waitedandfollowedthis“newadvice”,weprobablywouldhavebeendealingwithcancer outsidethecapsuleoftheprostateandaverydifferentstory.HadInotjoinedawoman’s on‐linesupportgroup,IwouldnothavepushedashardasIdidforMiketofollow‐upwith hisurologist.IhearstoriesofmanymenwhodidnothavePSAtestsandthenhad advancedprostatecancer,menwho’sdoctorsignoreddoublingPSA’s,etc.IknowthePSA testisnotperfectBUTitiswhatwehavefornow. Janet Myhusbandis52hehadaPSAof1.3lastyearandnowthisyearitwas3.4his biopsywaspositiveandheishavingaroboticprostatectomythankgodforPSAtests otherwisewewouldn’thaveknownandwouldn’thaveachancetofightit. Philip Iama19‐yearprostatecancersurvivorwhohadthreePSA‐based biopsieswhichdiscoveredmyGS4+4=8cancerwhichhadmetastasizedtoseveralparts ofmybody.Further,Iknowthetoxicsideeffectsfrommyvarioustreatmentsloweredthe qualityofmylife. Nonetheless,Irecommend: 1.Menshouldparticipateinindividualonlyifcounselingisoffered. 2.Menbetween40and75,haveadiscussionwithyourdoctortoseeifyouhavehighrisk factorsassociatedwithhavingprostatecancer. 3.MakeachoiceaboutPSAtestingonlyafteralongtalkwithyourdoctor. Oscar In2006whenIwas60yearsoldIhadrecentlymovedtoArizonasofoundanew primarycaredoctor.Ihadmyannualphysicalandthatdoctorfailedtochecktheboxfor PSAaspartofmybloodworkup.Itwasn’tuntilthefollowingyearwhenIchangeddoctors thatIdiscoveredthisbecausemyPSAcamebackat16.1Isaidthiscannotbepossible becauseIhadanannualphysicalthepreviousyearandnothingwassaid. LittledidIknowthatthePSAtestwasnevergiventome.Sonowitwas2007andI wasalreadyayearbehindtryingtofightthisdisease.UnfortunatelymyGleasonscorewas 10andIwasnotacandidateforsurgery.FiveyearslaterIamstillfightingwithPSA Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page44 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. scoresashighas988.ThankgoodnessmyseconddoctordidrunaPSAtestthefollowing yearwhichiswhatyouwouldexpectona60or61yearoldmanasjuststandardofcare practice. John ThankstoaPSATestinDecemberof2005whenmyPSAwas26.4,Iunderwent radiationandhormonetreatments.Sincethen,myhealthhasimprovedtoanalmost undetectablePSAof.02;andmylifehasbeenextended. Anonymous IamawidowofamanwhohadProstateCancer.Histestingwastoolate,butI definitelyfeelPSAtestingregularlywillsavemen’slives.Don’tmakeitdifficultformento getthistest.Itmaysavesomeoneelsefrombecomingawidow. Larry IhadaPSAtestlastyear.Itwaselevated.Ifollowedthroughwithabiopsywhich confirmedthePSAfinding.I’msohappytoknowthatIamnowcancerfree! Darrell Iwasdiagnosedat48withaveryaggressivecancer.Ihadnofamilyhistoryandam Caucasian,sowithoutearlytesting(myfirstPSA),Iwouldnothavecaughtmycancerfor manymoreyears.ButthereisnosciencetoindicatethathadInotcaughtituntilIhad identifiablesymptoms,itwouldhavechangedanything.Iamstillfightingadvanced cancerelevenyearslater. ButbecauseIhavebeenactiveinasupportgroup,Ihavemetdozensofmenwho nevershouldhavebeentreated,eitherbecauseoftheiradvancedageandhealth,orjust becausetheircancerwasindolent.Manyofthesehaveserioustreatmentsideeffects.I alsoholdtheUrologistsaccountablewhotalkedthesemenintotreatmenttheydidnot need. Julian At50yearsoldapaininmyhiptookmetotheDr.sothatIcouldbetoldthatthe past10yearsofdigitalexamshadnotdetectedmyprostatecancer.Havingmetsonmy hipputmeinthecategorythatitwastoolatetotreat.Iwasgiven2years.LuckilyI respondedtoADTtreatmentandIamstillalive6yearslater. Ican’thelpbutthinkWHATIFPSAscreeningwasusedwithdigitalscreeningwouldthe outcomebeanydifferent? Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page45 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. Donotexcuseawayouroptionstosurviveandlivewithdignity.Detectionallows ustodecideourcourseoftreatment.Ourlives,ourchoices. Tom Iamaprostatecancersurvivorformorethannineyears.InAugust2002,Iwas sufferingfromexhaustion,goingtomyfamilydoctorforaphysical.HeperformedaPSA test,revealingthatprostatecancerwascausingmyproblems.Otherwise,Iwasafifty‐ eightyearoldinperfecthealth.Aftermanyexaminations,tests,anddiscussionswith numerousdoctors,Idecideduponaradicalprostatectomy.Yes,thisterribledisease changedmylife,causingmemuchfrustration,butIhavebeenalive.Inowhavesix granddaughters(twobornaftermysurgery),threegrandsons(twobornaftermy surgery),andonegreat‐grandson.ThebiopsyrevealedIhadtheveryaggressivecancer, withathree‐yearsurvivalrate.ThankGodforthatPSAtest. Harry IdonotunderstandthefuroroverasimplePSAtestonanannualbasis.Mostofus in“theagebracket”goforanannualphysicalexamonceayearanywayandgivebloodfor cholesteroltestsaswellasdiabetes,etc.What’stheharminaddingonemorecheckmark ontheformtotestthePSAlevels? MyPrimaryCarePhysician(PCP)notedthatforthepasttwoyears,myPSAlevels hadrisenand‘suggested’thatIseeaUrologistforadvice.Ididthiseventhoughtherewas nopressurefrommyPCPtodoso.TheUrologistlookedatthehistoryandsuggestedI waitforanotherPSAtest6monthsdowntheroad.Whenthisoneshowedevenmoreof anincreaseincounts,he“suggested”abiopsyontheprostate.Thisresultedinalowlevel ofcancercellsbeingpresentatwhichtimeheexplainedalloftheoptionsthatwere availabletome. Hedidnotpushmeintomakingadecisionforanyparticularoptionandafter discussionswithmywife,Idecidedtowaitandseeratherthantakedrasticandcostly measures.Ithasbeen8monthssincemydiagnosisandIhavehadaPSAtestagainafter4 months.Therewasnochangesomydoctorwillcontinuetomonitorme.AtleastIknow whatIamdealingwithandthedecisionistotallymineastowhethertogofurtherwith thetreatmenteventhoughbothmyUrologistandPCPhavebothagreedthatIhavemade therightchoiceatthispoint. Ithoughtthatthepurposeofproactivetestingwastopreventmoreserious complicationsbynotbeingtestedregularly.Tonottestatalltomeseemsludicrous especiallyintheover50group. Margaret WhilePSAisnotanendallindiagnosingprostatecancer,itisthebestmarkerwe haveasyet.Iamanadvancedpracticeregisterednurseandthecoordinatorofaprostate Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page46 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. cancersupportgroup.Wehavememberswhowereasymptomatic,hadascreening includingaPSA,andwerediscoveredtohaveprostatecancer. Charles Ihadaradicalroboticprostatectomy.MyPSAnevergotabove3.2butbecauseit hadfluctuatedbetween2.2and3.2thedoctorthoughtIneededtohaveabiopsythat revealedcancer.AfterstudyingdifferentmethodsIdecidedonthecompleteremoval becauseIfeltthatthiswouldgivemethebestassurancethatthecancerwouldbe removedandithasbeen6yearsandpraisetheLordI’mstillcancerfree.Also,asaresult ofmyexperience,2yearslaterwhenmybrotherhadasimilarreadinghegotabiopsyand itrevealedcancer.Heelectedadifferentmethodbecauseofhisageandhealthandtoday healsoiscancerfree.Bothofusarethankfulthecancerwasdetectedearlythroughthe PSAtestsandappropriateactiontaken. Don PSAtestingprobablysavedmylife.Notonlywasitkeyinthedetectionofmy prostatecancer,butitwasalsoinstrumentalindetectingthefailureofmyprimary treatment.Tothebestofmyknowledgeitistheonlythingthatwillbeabletotellmeif thereisareturnofthedisease.Iwasfirstdiagnosedin2000. Lana Althoughmylovedonelosthislifetothisdreadfuldisease,thePSAtestwasthe bestmeasureofhowwellacancertreatmentprotocolwasworking.It’saneasytestto take,andisnotinvasive.Beingasimplebloodtest,itisrelativelyinexpensive. James AyearlyPSAbloodtestistheonlywayofcatchingprostatecancerearlywhen thereistimetostopitinitstracksorarrestitforaprolongedperiodoftime.Itistheonly waytomonitoreffectivetreatment.Thecostoverthelongrunwillbemoretotreat prostatecancerthatisinoperable,(believemeIknow!).Therewouldbenoknowncourse ofactionforsuccessfulornon‐successfultreatment.Itwouldnotbesoundmedical practicetosuspendPSAtestingwhenithasbeenproventhatitisa“benchmark”for men’sprostatehealthandmen’sprostatecancerprogression. Kenneth RoutinePSAtestingalertedmydoctortomyprostatecancer(GleasonScore:7). Evenmoreimportantinmycase,withoutPSAtestingfollowingmyprostatectomy,I wouldnothaveknownthatsomeofthecancerremainedandthatIalsoneededradiation. Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page47 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. Anonymous Iamahealthy55yearoldandmylastPSAscoreincreasedsignificantlyandwas beyondtheacceptablelevelsformyage.IwentforabiopsyandwedidfindthatIhad prostatecancer.WithoutthePSAscoreImaynothavebeendiagnosedearlyandhavethe abilitytotakecareofthisbeforeitwasmoresevere. Johnny Ihaveadvancedprostatecancer.Aftersurgery31/2years,IstillhadaPSA reading.Later,testsrevealedithadspreadto5ofmybones.Thereisnocurebutitis beingcontrolledbytreatmentatthistime.ThePSAtestisveryimportanttomeatthis time.WhenIgetaPSAreadingagain,Iwillknowthatthetreatmentisnolongerworking. Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page48 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. Lawrence 12yearsagomyPSAstartedtorisepromptingmydoctortobemoreconcerned aboutthepossibilityofProstateCancer.In2001PSAwashighenoughtowarrantaBiopsy whichcamebackpositiveforprostatecancer;IhadaGleasonscoreof8.Iwas59and madethedecisiontohavetheprostateremoved.ThePSAstayedlowfor5yearsandthen startedtorise.In2005Ihadanotherbiopsyperformedandconfirmedthatthecancerwas intheprostatebed.Itookradiationtreatmentforthatandafter5yearsmyPSAhas startedtoriseagain.Iamonawaitandseeschedule.AtsomepointIwillstarthormone treatments. IfithadnotbeenfortheinitialPSAtest,thecancerwouldhaveprobablyspread andIwouldbeinworstshapetoday.IhadnoSymptomsandfeltgreat.Wouldneverhave hadhadthebiopsyifithadnotbeenforthePSA. Ed Earlyinmyprostatestory,thePSAtestwasbeneficial.Asthelevelkeptrisingover theyears,cancerwaseventuallydiagnosedthroughmysecondbiopsy,atage50.Thisis nottosayI’mafanofthePSAtest–moreonthatlater. Afterdiagnosis,Iwaited16monthsbeforeagreeingtosurgery–veryactively tryingtofindalternativetherapiesthroughwhichIcouldavoidsurgery.Eventually,when myPSAlevelclimbedto14.0Iagreedtothesurgeryandhadmyprostateremoved. MyPSAstoryaftersurgeryhasanentirelydifferentflavortoit.Itbegantoriseslowly eachtimeIwastested,toaneventuallevelof0.14.Notasignificantlyhighnumber,but theconcern(mydoctor’smostly)wasthatitwasalwaysincreasing,notfluctuatingupand down. Here’sthemostnegativeaspectofmyPSAexperience.Atoneappointment,my surgeontoldmyPSAlevelhadrisenfrom0.14just3monthsago,to0.24currently.Avery fastrise,andcauseforpanic(again,onhispart,notmine). Athisrecommendation,Ischeduledanappointmentwiththeradiologisttogoover options.WhenIcameinhesaid“IseeyourPSAhasrisento0.18.”Longstoryshort,the 0.24wasincorrect–nooneknowswherethatcamefrom.Theactuallevelwas,indeed, the0.18asquotedbytheradiologicaloncologist.Angrythattheycouldn’tgettheir numbersstraight,Idemandedanotherblooddrawthatday,andthatlevelshowedupas 0.16–decreasingforthefirsttimesincesurgery2‐1/2yearsprior.Threemonthsafter that,mynextandcurrentlevelisdownagainto0.14. Mybiggestissuewithallthisisthefactthatbasedonthisincrediblyflawedblood test,incombinationwiththeerrorinrecordingthelevel;Iwasstronglybeingurgedto “signup”for38consecutivedaysofradiationtreatment.Andnoonecouldunderstand whyIwassayingno! ThereiscurrentlyalotofpressonwhetherornottogetaPSAtest.Thatshouldn’t bethequestion.It’sallwemenhavetochoosefromrightnow,soofcourseweshouldget tested.Themoreimportantquestioniswhyisn’ttheremorefundingtofindanaccurate Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page49 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. testforprostatecancersowedon’thavetocontinuemutilatingourbodieswith unnecessarybiopsies,surgeriesandradiation. Daniel Iwasdiagnosedwithstage2ProstateCancerin2002.TheevaluationofthePSA enabledmyUrologisttodoabiopsywhichgotmea5/6Gleasonscoreandmadethe decisiononwhattypeoftreatmentIwouldseek.Ifthedigittestwastheonlymethod beingusedIwouldhavenotbeensolucky.MyUrologistandmysecondopinionUrologist bothadvisedmetheglandwassoftandpliableshowingnosignsofnodules.Ifitwasnot forthePSAtestmyoutcomewouldnothavebeensogood.Now,cominguponmy10year birthday,IgetaPSAtesteachyeartostayinformedofanypossiblereoccurrence.I’mone oftheluckyones. Scott IamadamantthatmenshouldreceivethePSAteststartingat40.InOctober,2010, whenIwas47,Ihadsymptoms(slowerurinaryflow,painduringsex‐sorry,nodelicate waytoputit)thattwodoctorsdiagnosedasadoublehernia.Thedoctorsdidnotconsider Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page50 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. cancerasapossibilitybecauseIhavenofamilyhistoryandIam,otherwise,exceptionally healthy.WhenIstillhadsymptomsthreemonthsaftertheherniasurgery,athirddoctor finallyorderedaPSAscreening.18wasnotthenumberIwaslookingforfrommyfirst PSAbutit’stheoneIgot. Overa3monthperiod,Ihad2moresurgeries(includinganopenradical prostatectomy)andcountlessMRIs,CTs,andPETscans(includinganendo‐rectalMRI thatIwouldn’twishonmyworstenemy).Thecancerhadspreadtomyseminalvesicles, nervebundles,andlymphnodes.Manylocaldoctorsviewedmeasalostcause. Throughtirelessresearch,mywifeandIfoundtwodoctorswhowerewillingto aggressivelytreatmycancerpost‐surgery.IamcurrentlyonmoremedicationsthanIcare tocountandamalmostfinishedwith54sessionsofradiationtreatment.Theobviousside effectoftheprostatectomyandhormonaltherapyistheendofanormalsexlife.To remedythat,Imostlikelyhaveanothersurgerytolookforwardto. Ibelievethisordealcouldhavebeengreatlyminimizedifmyinternistwouldhave startedannualPSAtestsat40.Itislikelywewouldhavecaughtthiscancerwhenitwas stillcontainedintheprostate.Thatwouldhavegreatlychangedmycourseofcareandhad lessimpactonthequalityofmydailylife. Steve In2006attheageof52IhadmyfirstPSAtest;Ireallyshouldhavedoneitearlier eventhoughmyDRE’spreviouslyindicatednothingofconcern.MyPSAwas14.8,ina coupleofmonth’sithadgoneupto15.8andmyGleasonScorewas7.Withan intermediatestageofcancermytreatmentoptionswerelimited;ifIhadgottentesteda coupleyearsearlierIwouldhavehadmoreoptionsavailabletomeandahighersurvival rate.Ifitwasn’tforthePSAtestIcouldhaveeasilydiedofthisdisease. Anonymous Ihadnosymptoms,nophysicalcomplaints,anactivesexlifeandnourinary problems.Ihadadigitalrectalexam,andwaspronouncedfitasahorse.Mybloodwas thentested,forthefirsttime,andIscoredaPSAof8atage53,followedbyaPSAof12 onemonthlater.Followinganultrasoundanda12corebiopsy,Iamnowdiagnosedwith Stage1prostatecancer,witha90%chanceofrecovery.Iwillforeverbeindebtedtomy wifeforinsistingonthePSAtest. Ben PSAtestinghasbenefitsfornon‐PCpatientsaswell.MyPSAjumped750%in6 months.Thatfact,plushavingafamilialgeneticpredispositionforPC,mademyurologist retakeaPSAreading6weekslater.Thesecondreadingshowedamuchlowerlevel.With thisnewestresult,alongwithanormalDREandnootherdiscerniblecancer Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page51 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. characteristics,myurologistwasabletotellmethatthetemporaryPSAspikewasmost likelyattributabletoothercausesinspiteofmygenetics.Whatarelief! Hugh WhilemyPSAwasn’thighlyelevated,itwasawarningsign.Adigitalexamthen revealedthetumor. AsubsequentriseinPSAafteraradicalprostatectomyindicatedarecurrence. MyGleasonscorewasa4+3=7,somycancerwasmoderatelyaggressivewithapositive margin.Ifmycancerhadnotbeendetectedearly,IamconvincedIwouldbeintrouble now. IfeelverystronglythatthePSAtestsshouldbecontinued.Earlydetectionis critical.Iamgratefulthatthesetestshaveledtomydiagnosisandtreatment. Frank IunderstandthatsomebelievePSAtestingresultsinunnecessaryworryand biopsies. Theproblemwithnotbeingtested,inatimelymanner,isthattheCancermay escapeintothebloodstream.Thatwastrueinmycasesoevenaftersurgeryandradiation Inowhavecancerinmybones.Withearlydetectionacureisavailableanditis irresponsibletosuggestthatPSAtestingshouldnotbeencouragedandcontinuedasa firstlineofdefense. Ed Iwillbe50inMay,2012.InlateDecemberof2006,IwenttoanUrologistafter seeingbloodcertainmorningsafterintercoursethepreviousnight.Heperformeda cystoscopyandfound“calciumstones”beforetheurethra.Itwasarelief;howeverthe bloodnevercompletelydisappeared.InJanuaryof2008,myprimarycareMDwantedto sendmeforanotherscope,butchosetoincludeaPSAinmyannualbloodworkupdueto myindifferencetothepainthatthatprocedurecaused. Thenumbercameback(3.0)andwewaitedtodoanotherPSAtestin3months. Becausethatnewnumberwasover(5.0),myresultsweresenttoanurologistandIwas instructedtoscheduleanappointment.Foolishly,IwaiteduntilOctobertocallthe urologist,tenmonthsaftertheinitial(3.0)PSA.Whileonthephone,theofficecollected thefileandtoldmeto“getinthere”immediately. A“finger”examresultedinafollowupappointmentforabiopsy.Withinaweek,I wasbackintheurologist’soffice,withmywife,hearingthat2tumorswereclosetothe insidewallofmyprostate.Ilistenedcarefullytomyoptions:1)Donothing,2)Radiation, 3)Prostatectomy,and4)Computer‐assistedlaparoscopicradicalprostatectomy(CALP).I choseCALPonDecember,8of2008. Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page52 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. Post‐surgery,Iworeabagfor2weeks,followedbyKegelexercisesusingBiofeedbackand electricalstimulationfor8weeks.Sexualfunctioncamebackalmostimmediatelyto100% andPSAhasbeen(0.0)to(0.1)eversince.Earlytesting=earlydetection! Claude MyPSAtestresultedinabiopsy.Theresultofthatrevealedprostatecancer.Iwas treatedforit.Thatwasin2006.Todatethingsarenormal.DoIbelieveinPSAtests…you betIdo. Anonymous MyPSAhastoremainat0.01.Igettestedeverysixmonths,duetoastage3atumor backinJune2006.Mycancerhadpositivemarginsbutafteraradicalplusfortydaysof IMRTradiationandfourteenmonthsofhormoneswehavecancerfreeresultsno problemswithotherfunctions.mydocwasverysteady!IknowthePSAtestplusthe digitalsavemylife!Weknowthatthedoublingtimemostimportant.MyPSAtestthetest thattellsmeifsomethingisbrewing. Bill IamsixyearsurvivorduetothePSAandroboticsurgery.Sincethesurgerymy PSAhasbeen0.1.IfitwerenotforaPSA,I’msurethediseasewouldhaveadvancedtoan untreatablestate.IrealizethePSAmaynotbetotallyaccuratebutitisbyfarthebesttest wehaveatthispoint Robert MycancerwasdiagnosedbyDREbecausemyproviderdidnotdoPSAs.Myfirst was11.8whichputmeatriskforspread.AfterradiationtreatmentmyPSAswerelowfor 10.5years.Icouldmeasureatrendlineandwhenthedoublingtimegotto6monthseven thoughthePSAwaslowIhadanevaluationandfoundmicro‐metsonthesurfaceofmy lungs. CurrenttreatmentkeepsthePSAlowbutwithoutit,Iwouldhavenowaytoknow whenthistreatmentfailsandwhenIwouldneedfurthertherapy.Iam14+yearsoutfrom diagnosisandatage70ingoodhealthIstillhavealifeexpectancyof5‐10years.Iwould liketoavoidthepainfuldeaththatmenexperiencewhenprostatecancerisnottreated. James WhenmyPSAcounthaddoubledwithin6months,mydoctororderedabiopsy, whichshowedamalignancywithaGleesonscoreofsix.Ihadittreatedwithcry‐surgery, andamcancerfreeafter5years! Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page53 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. Anonymous Myhusbandwasdiagnosedwithprostatecanceratanannualphysical.Hehad absolutelynosymptoms.OnlytheriseinhisPSAalertedmyinternist.HisPSAwasonly 3.2(withinnormallimits,accordingtothelab),butourinternistwasconcernedaboutthe velocityoftherisewithinjustoneyear.Hiscancerwasaggressive,andbrokethroughthe capsule.HehadNOSYMPTOMS!! Therewasnodoubtinourmindsregardingourchoice.Hewas57,andwedecided onsurgery.Thesideeffectswerenotevenaconsideration….tous,thechoiceoflifewas moreimportant!Myhusband,hisfather,andhisgrandfatherallhadprostate cancer…..whataboutour2sons?Arewetotakeawayouronlyoptionofearlydetection forthesetwoyoungmen? Itisanarchaicmyththatprostatecanceris“slow‐growing”. Intheyear2011,arewetobelievethatthereisonlyONEtypeofprostatecancer??With thelevelofmedicalresearchandtechnologytoday,togetherwiththegeneticanalysisof prostatetumors…..howcanaglobalstatementbemadethat“Prostatecancerisslow‐ growing,andmostlikelyisnotfatal”?Untilanotherdiagnostictestisavailable,thePSA mustbegiventoallmenyearly…..especiallymenwithafamilyhistory. Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page54 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. Jorge PSAistheONLYtestwehaveregardlesshowflaweditis.ThankstoPSAIwasable todiscovercancerinmyprostrateandhaveitremovedwhilethecancerwascontained. OtherwiseIwouldbeacandidateforearlydeathduetoprostatecancer…. Pinky Prostatecancerhaschangedmylifeforever.Havinghormoneresistantprostate canceristhepits.Veryfewoptionsforme.Ifmydoctorshadfounditearlieritwouldbea muchdifferentscenariothanIamnowfacing.GETTESTEDEARY!!Itmaysaveyourlife!!!! Anonymous Wentinforavasectomyat47yearsold.Nohistoryofprostatecancerinthefamily. TheurologistsuggestedaPSAtestaspartofthisnormaltreatmentplan.Resultwas2.5, biopsyfollowedwhichconfirmedcancer.GiventhefactthatIwasunder50withsmall childrenandagoodprognosis,prostatectomywastherecommendedprocedure.Fully “recovered”2yearspost‐op,butsexlifesucks.Don’tknowifIwouldhavebeenbetteroff justwaitingandseeinggivingthehighratesofindolentprostatecancer. Jerry PSATESTINGPROBABLYSAVEDMYLIFE!At55,myPSAnearlydoubled(6.5);I wentinforabiopsyandonlyonecorewascancerous.Gleasononitwasshown@3+4! (REMEMBERTHAT) Ihadsurgerywithinamonth.FULLBIOPSYSAMEBACKAT5+3!LUCKILYALLMARGINS &NODESWERECLEAR!I’mcomingupon3yearssincesurgeryandPSAisundetectable!I havea24yearoldsonandInowshouldhavemanyyearstoenjoyhistalentthankstoPSA testing! Anonymous Late1992,IgotundercareofanewGP.HadbeenonMedicareabout3years.Was toldthatIcouldhaveageneralcheckupannually.MynewDr.,whohadjustbegun practice,andwasamemberofmychurch,askedifIhadeverhadaPSAtest.Ididnot knowwhatitwas.Heexplainedittome.Isaid,ok.Camebackelevated,sentmetoa urologist,anddigitalexamindicatedpossiblemalignancy.Wentinforabiopsy,PSAwas elevatedfromabout10daysbefore. Optedforasurgery.Gavemyownbloodforaboutamonth,andhadsurgery.PSA hadgoneto18.SaidHedidnotgetitall.Hadradiation,allthiswasafterJan93.PSAnow is.1.HadInothadthefirstPSA,whichasIseeit,iswhatthebrainsaresayingtheywon’t payfor,Imostcertainlywouldhavebeenterminal.Itwasinthelymphnodes,butnot beyondthem. Thisisonlythebeginning.Inmycasetheyhavebeenalmost0before.19yearsis prettygood. Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page55 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. David Iagreethatthisistheonlytestwenowhave,andshouldcontinuetobecoveredby healthinsurancecompaniestoallowmentheopportunitytobeaswellinformedabout theirhealthaspossible.Atanyrate,itsavestheinsurancecompaniesinthelongrun,by oftendetectingcancerearly,sothatpossiblylessdrastictreatmentoptionsmaybe administered,andwithamorepositiveoutcome. AbettertestWILLbediscovered,anditwillbecomeincumbentupontheinsurance companiestocoverthatoneanyway,andforthesamereasons. David Myfatherdiedahorrible,painfuldeathfrommetastaticCaPintheerawhenitwas a“quietdisease”.Consideredjustadiseaseofoldmenwhodidn’ttalkaboutit.Being forewarned,IgotearlyPSAtestinginthemid‐90andsurvivedthedisease. Itwillbecriminaltonowbegindiscouragingmenfrombeingtested. Whathappenedtothemantra“EarlyDiagnosis,BestChanceforCure”?Asmuchas PSAhasshortcomings,itisSTILLthecanaryinthemineforCaPdetection. WhatisneededisMORERESEARCHtoallowdiagnosisbetterthanPSAandDRE. Butinstead,wegetanti‐screeningmessagestheresultsofwhichwillbeMOREDEATHS fromprostatecancer. John In2004myprimarycarephysicianreferredmetoaurologistforminorpaininthe prostatearea.TheurologistprescribedthreeweeksofantibioticsandwhenIstillwas havingsymptoms,heblameditonmybicyclingactivity.Hewantedmetoschedule anotherappointment,butdidn’texplainwhy.Icancelledtheappointmentandaccepted hisbicycleexplanation. TwoyearslaterIwenttoanewprimarycarephysicianforaroutinecomplete physical.Imayormaynothavementionedinmyfamilyhistorythatmyfatherandmy maternalgrandfatherbothhadprostatecancer.MynewdoctorincludedPSAinmyblood work.MyPSAwas32.Thedoctortreatedmewithantibiotics(sameasIhadtwoyears earlier)toseeifitwasaninfection,thenretestedthePSA–theresultwasthesame–32. MydoctorthenreferredmetoTHESAMEurologistthatIwenttotwoyearsbefore. Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page56 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. Thistimeherecommendedabiopsy–resultwasrelativelyaggressivecancer (Gleasonindex6‐7.)Ineverchallengedthisurologistforhispoorcommunicationorfor notcheckingmyPSAtwoyearsearlier,butIswitchedtoayounger,moreproactive urologistformyradicalprostatectomyandsubsequentmonitoring.CATscansdidnotfind anyevidenceofcancerbeyondwhatthedoctorremovedduringsurgery.However,three yearslatermyPSAbeganrisinganddoublingfairlyquickly. TheONLYconclusionthatmadeanysenseisthattherewerestillprostatecancer cellsinmybody.Iwentthrougheightweeksofradiationtherapyonmypelvisinspringof 2010.IamnowfacingthestrongpossibilitythatIwilldevelopsystemicprostatecancer. Nofurthersurgeryorradiationwillstopit.Thereisnoeffectivechemotherapyfor prostatecancer,somybesthopewillbetoslowcancergrowththroughhormonetherapy –withsideeffectsprobablyworsethanIhaveexperiencedfromsurgeryandradiation. Mypointinthisdetailedstory:IfmyPSAhadbeencheckedin2004(whenImost certainlyalreadyhadprostatecancer)thenIwouldhavebeentreatedtwoyearsearlier– andwouldhavedefinitelyhaveimprovedmychancesofavoidingsystemiccancer. COMMUNICATIONisthekeyonthissubject. Menneedabetterunderstandingofwhattheirprostatedoes;thedifference betweenaggressiveandnon‐aggressivecancers;andtounderstandtheirtreatment optionsandlong‐termsideeffects.Ifyourdoctorisapoorcommunicator,findanother doctor. ThePSAmaynotbeperfect,butitiscurrentlytheONLYearlydetectionscreening tool.TheresultsofaPSAscreeningaresimplythestartingpointformedicalinvestigation –nottheconclusion.AndsincethereisNOCUREforsystemicprostatecancer,wouldn’t yourathertakethechanceonincontinenceandimpotenceoverDYINGthehorribledeath thatsystemiccancerultimatelyposes?IknowthatIwishIhadaskedmorequestionsin 2004.ItiscriticalthateachmanunderstandsindetailhowthePSAworksandthevaried directionsthatfurtheranalysismightgo. Aprostatebiopsyisnowalkinthepark,butitistheONLYwaytofindoutforsure ifyouhavecancer.AndwithoutthePSA,howwouldyouevenknowthatyoumighthavea problem? Paul Iwas46whendiagnosedwithPCa.Hadmydoctorfollowedtheusualprotocol?I’d bedeadbynow.Iwashealthy.NofamilyhistorythatIknewof.Fastvelocity–allthebad stuff. ThePSAtestsavedmylife. Vale Ifitweren’tforPSAtesting,I’dlikelybedeadordyingnow.Iwaseventually diagnosedwithprostatecancer–afteraPSAtest,thenbiopsy–attheageof49.Bythetime mysurgerycamearound,thecancerhadalreadybeguntospreadbeyondtheprostate. Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page57 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. HadthatinitialPSAtestnotbeendone,thecancerwouldhavespreadunchecked.ThePSA testhelpedsavemylife. James MyPSAwasonaregularcheckgiventheswollenprostate.Suddenlythecount jumpedfroma2toa3ina6monthperiod.Theonepointspikewasofconcerntobothme andmydoctor.Itstayedatthe3whencheckedagainin3months,Biopsyreveledcancer inonecoreoutof12.Gleasonof6.MyDad’sbrotherhadprostatecancer13yearsearlier andithadescapedtohisbladder. Mydecisionwaseasy;takeitoutnow–a.s.a.p.Idonotneedtowaitandfindouta fewyearslaterthatacellortwohadescapedandthecancerisnowinanotherorgan. Anonymous IcouldnotgetmyprimarycarephysiciantolistentomewhenItoldhimthatIhad repeatedprostateinfections.Hejustkeptgivingmeprescriptionsagainandagain.The infectionwouldclearupandthenitwouldreturn.Iaskedforhimtosendmetoa urologistbuttheurologistwasonlyinterestedindiagnosingmeashavingBPH.Ididnot havethesymptomsofBPH,butthediagnosiswaskept. So,Iaskedforasecondopinion.Iwassenttoafriendoftheurologistwhowasalso theChairmanoftheDept.ofUrologistataveryfamousmedicalschool.Thisurologistdid notbelieveinusingthePSAandhediagnosedmeashavingabladderproblem.Heputme onmedicationthatdidnotdoanythingtohelpwiththepersistentprostateinfections. So,IwenttotheVAHospitalandaskedthemforaPSA.ThePSAwas9.6andIhada previousPSA(attheprimarycarephysician’soffice)6monthsearlierthatwas2.4So,I handcarriedthePSAreporttotheChairmanofUrologyandaskedhimwhatitmeant.He ignoredthePSAof9.6andthesixmonthearlierPSAof2.4andtoldmethatIhada bladderproblem.IpersistedandaskedforabiopsybytheChairmanoftheUrologist Departmentandhe(seemedtobeangry)agreed.ThebiopsyshowedthatIhadstage3tb prostatecancer. Ireferredmyselftoacancercenterandtheystartedmeonhormonetherapy,then 3monthslaterIhadaradicalprostatectomyfollowedby42daysofradiation.The prostatecancerhadspreadintothesurroundingmusclestissueandlowerabdomen tissue.Theyremoved11lymphnodesontheleftsideoftheabdomenand12lymphnodes ontherightsidebeforethefoundcancerfreelymphnodes.Ihavebeencancerfreefor5 yearsandamstillupsetaboutthewayIwastreated.Ihopeothermenwillpersistwhen theyfeeltheyhaveaprostateproblemandgettheappropriatehealthservices. Carl Inearly2008attheageof62IhadPSAtestthatwashigh.UltimatelyIwas diagnosedwithprostatecancerinAprilandhadaroboticprostatectomyinAugustofthe Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page58 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. sameyear.Idon’tknowifIwouldbealivetodayifthattesthadnotbeenpartofaroutine physical.Asmuchasthattestcreatedconfusion,uncertainty,anxietyandevenangerin me,IamverygratefulthatIhaditandthatitsetinmotionaseriesofeventsthatledto mybeingcancer‐freetoday. Inaddition,IbecameawareofmyexposuretoAgentOrangeinVietnamin1967, somethingIhadnoconsciousawarenessof.Thisstartedanotherchainofeventsleading metoconfrontsymptomsofPTSDfrommyexperiencesinVietnam,resultingindiagnosis, therapyandultimatelyanewacceptanceandsenseofpeaceinmylife.Iconnectedwith theVeteransAdministrationandnowreceivemostofmymedicalcarefromtheVA,which doesanamazingjobofcaringforveterans. Meditationisnowanimportantpartofmylifethatkeepsmecalm,appreciative andopentolove.Iwillforeverbegratefulforthisnewchapterinmylifeandthe appreciationIhavenowforthewondersinmylife,thedeeploveIsharewithmywife, friendsandfamily.ItallbeganwithasimplePSAtest.Itsavedmylifeinsomanyways thatIwillalwaysbegrateful. Steven IwouldbeinaworldofhurttodayifnotforthePSAtest.Mycancerwasdiagnosed aftersurgeryasbeingconfinedtothegland.However,mysurgeoninformedmethatifI wouldhavewaited12to15monthstoaddressthisissue,theoutcomewouldhavebeen differentandthecancerwouldnothavebeenlocalized.Withoutthescreening,Iwould haveneverknown. ThePSAtestisallwehaverightnowandIwouldrecommendthatmencontinueto gettestedinordertomakeaninformedchoice.Wellover30,000mendieayearbecause ofthishideousdisease.IfeelIhavebeengivenadditionaltimeonthisearthanditisdue toaskilledsurgeonandaPSAtest. Nathaniel AroutinePSAtest6yearsagoledtoabiopsywhichshowedIhadaGleasonscore of8.0.ThebiopsyclearlyshowedIhavecancerandIwastreatedandmyPSA’shave consistentlybeen0.1.IamafraidifinsurancecompaniesstoppayingforPSAtestingthat manyneedlessdeathswilloccur,especiallywithhighriskgroupslikeAfricanAmericans. Douglas PSAtestingsavedmylife.Ishowednoothersymptomsofprostatedisease.Itwas normalsizewithnopalpablenodesandIhadnotroubleurinating.However,therewasan increaseofmyPSA.Asaresultofthatalone,Iwasbiopsiedandcancerwasfoundinearly stages.ThePSAtestclearlyalertedmethattherewasaproblem.Itsavedmylife. Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page59 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. Terry In2003ItookaphysicalexamwhichincludedaPSAtest.Theresultsindicateda possibilityofprostatecancer.Thedoctororderedabiopsy.Theytooksixcoresamples fromdifferentsitesontheprostate.Threeofthesecamebackasonehundredpercent cancerous.Ielectedtohavemyprostateremoved. IgetafollowupPSAeverysixmonths.Thereisnoindicationofcancernow.Iama cancersurvivorthat’sheretosayIamalivebecauseIgotaPSAtest. Michael IamaPCasurvivorsince2001(presentage61)TenyearsagoIhadno symptomsofprostatecancer.IwenttoaPSAscreeningeventatworkfortesting. Thedigitalexam(DRE)was“questionable”,inthedoctor’swords,butthePSAwashigher thannormal(5.7)AfteranotherPSAwasdone(6.0)abiopsyconfirmedthepresenceof cancer.Ihadanopenprostatectomydone(4‐2‐01)toremovetheprostateanda1.5cm tumorwaspresentwithaGleasonof3+3=6.Thetumorwascontainedwithintheprostate itselfbutattheveryedge.Iwaslucky. Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page60 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. Anonymous IunderstandthatthePSAtestisn’talwaysaccurateinregardtoforecasting.But,I cantestifythatdigitalrectalexamsaredefinitelynotagoodpredictor.Myexamsalways foundmyprostatesmoothwithnoabnormalitiestothetouchandthatwasevenafterI hadapositivebiopsyforcancer.IbelievetheTaskForceiscomingdownonthesideof toomanymengettingsurgerywhentheircancerlevelislow(unfortunatelynotmycase). WithoutPSAscreening,IwouldnothaveknownIhadadvancedprostatecancer. Iunderstandputtingmoneyandeffortintoanewtest,butwhatdopeopledonow,before thenewtestisdeveloped. TheanswerappearstobesomekindofutilitarianRussianroulette.Apparentlyfor themajority,whodonothaveadvanced,highriskcancer,bestnottoknowyouevenhave it,sothere’snoworryorunnecessaryprocedures.JohnStuartMillandMr.Spockwould undoubtedlyapprove.Ifyouareintheminorityandhaveamoreadvancedtype,well, bettertobeintheblissofignoranceonyourtracktodeath.Atwhatpointdoyoueven verifyifsomeonehasadvancedprostatecancer? Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page61 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. Anonymous Iamnowa66yearoldmale,thankstoarandomPSAscreeningadvertisedinthe localnewspaper. Mystorybeginsin1999,afterhearingofafriendscancer(notknowinganything morethanthathehadbeendiagnosedwithprostatecancer–andnotknowingathing abouttheprostate)Icalledmyfriendoutofconcernforhishealth. MyfriendsharedwithmehisproblemandsuggestedthatIgetaPSAtest.ItoldhimthatI hadbeenintothelocalHMOformyregularphysicaljustacoupleofmonthsbeforeand wastoldthatIdidn’thaveanyproblemswithmyhealth.Hesaidthatheknowsthatthe HMO,bypolicy,didn’tscreenforprostatecancerandthataPSAbloodtestwasan importantscreeningtool.IsaidokanddismisseditthinkingthatImightrememberformy nextphysical. AmonthpassedwhenInoticedafullpageadvertisementforafreeProstateCancer screening,andthought“thisseemstoberathertimely”SoIcalledthenumberand scheduledanappointmenttobescreened. ThedayofthescreeningIwasinstructedtofilloutahealthquestionnaireandthat Iwouldgivepermissionforablooddrawandaninterviewwiththeurologistwherehe wouldperformanexamcalledaDRE(digitalrectalexam).OKwithme,aftertheblood drawIwasexaminedbythedoctorandwhileperformingtheDREthedoctorletslipan ‘oh–oh’ratheraudibly.Iaskedwhytheoh–oh,andhesaidsomethingtothefactthathe mighthavefeltsomething,butthatthebloodtestwouldprovidemoreinformation. Acoupleofweekslater(actuallyApril1st)Ireceivedaphonemessagefromthe medicalassistantinstructingmeofmyPSAreadingof29.8andthatIshouldconsultwith myownurologistattheHMO. FollowingmyvisitwithmyHMOurologist,andtheresultsofmyprostatebiopsy andadditionaltests,IwaspresentedwithmyowndisturbinginformationthatInotonly hadprostatecancerbutafairlyproblematicchallenge.ThediagnosiswasthatIhada Gleason9disease,andfurthertestshadshownthatithadescapedthecapsule(spread beyondtheprostateorgan).Additionally,myprognosiswasn’tallthatrosy.TheDoctor toldmethatbasedontheoutcomeofthetreatmentthattheycouldonlyguessthatI wouldhaveabout8monthstotwoyearsbeforeIwouldfalltothedisease. ThegoodnewsisthatI(afteracoupleofrealemotionalmonths)Iwasabletoput athoughtfulprocesstoworkonlearningmoreaboutwhatmy‘competition’tolifewas about,andalsolearningmoreaboutfindingthe“A‐Team”totreatmydisease. IknowthatthegoalofthisreportwastopresenttheimportanceofPSAscreenings,buta secondarylevelofimportanceisWHATTODOwiththeinformation.First,don’tbe satisfiedwiththestatusquo.Learnmoreaboutyourpersonalsituation,andactonyour owninstinctsbygetting‘seconds’opinion.Ipersonallyinterviewed6differentdoctors, withvaryingspecialties. Iwasn’toriginallyacandidateforradicalprostatectomy,andactuallywasaboutto undergoexternalbeamradiation.However,duetoextenuatingcircumstancesandan Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page62 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. excruciatingSIMexperience.Iwasofferedanoptionofundergoingtheradical prostatectomy,leavingtheexternalbeamradiationasatrumpcardtofuturetreatment options. Tammy Myonlybrother,now55yrs.old,haddoneasbestosremovalinthe70's.Many yearslater,hecontractedMesotheliomaandhadtoquitaverygoodjobasaSystems EngineerforamajorcompanyinNYC.Thisalsoledtohisdivorce.Ithadgoneinto remission,Iguess,formanyyears.Inthattimewehadlostcontactofeachotheruntil recently.HeisnowdyingfromProstateCancerStageIVandcouldn’tgetaPSAtestuntilit wastoolate.Nothingmorecanbedoneformybrotheratthisstageinhislifeashehas about16monthstolive. Joseph MyPSAreadingwas5.1takenduringaroutinephysicaltorenewmyother prescriptionsat59yearsold.IthenhadabiopsywhichfoundthatIhad8outof10core samplespositiveandGleasonscoreof7(3+4).Ihadopensurgerytoremovemyprostate andnow18monthslaterPSAisundetectable.Ihavehadnoincontinenceissuesfrom about3monthsoutbutstillhaveEDissuesthatIcanlivewith. Anonymous WithoutmyPSAtestsIwouldnothavefoundcancerwithinmyprostate.Without thetestsovertheyearsthecancerwouldhavespreadoutsidetheprostateandImightnot beheretodaytowritethismessageofimportance. IhadradiationseedtreatmentandmyPSAtodayisat1.Ihopethatitcontinuestodrop below1.Veryimportantforallinsurancecompaniestorecognizethatwhilethisisthe onlytestthatwehavetoday,it’sagoodone. Anonymous IbelievethatthePSAtestsavedmylife.Youcannottellmethatthetesthas limitationsaswellasbenefits.ThesuddenrisesinmyPSAleadthedoctorstodetermine thattheyshouldlookdeeperintotheproblem. Edward IwasdiagnosedwithprostatecancerinJulyof1993.Ihadaroutinephysicalin whichmyPSAwasmeasuredandcamebackwithavalueof13.6ng/ml.Abiopsyproved thatIhadprostatecancer.Ichoosesurgerywhichhada50%successrateforthatlevelof Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page63 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. PSA.ThesurgeryfailedtoremoveallthecancersothatIwentonintermittentandrogen deprivationtherapy.Ifoundthistherapyverycaustictotolerateand,changedtoa Mediterraneandiet,loweredmybodyweightaccordingtomybodyMassIndex(BMI), tooksupplementsthatalsoaidedmyimmunesystemtokeeptheprostatecancerincheck. TodaymyPSAhasstayedbetween2‐3ng/mlthepast6years. Felicia WithoutPSAtestingmyhusband’scancerwouldnothavebeendetected.Even thoughhewasinthenormalrangehislevelshavedoubledfromlastyear.OurDr.sentus toaspecialistwhodidmoretestingandwefoundhehadcancer.Oncehehadthesurgery noteven3monthslateritwasfoundtobemildlyaggressiveandnearthebladder.Thank GodforPSAtesting. Anonymous Attheageof44,Iwenttoaurologistbecauseofsomecystsonmytesticles,which werenothingmorethanepididymiscystswhichwerenothingtobeconcernedabout unlesstheygotlarger.Theurologistaskedmeiftherewasanyhistoryofprostatecancer inmyfamily,andIsaid“yes,myfatherandbothgrandfatherswerediagnosedwith prostatecancerintheir70'sand80's”.Asaresult,herecommendedaPSAtest.The resultsofthePSAtestwererelativelyhigh(especiallyformyage),whichledtoadigital rectalexamwherehefeltahardspotonmyprostate.Thisledtoabiopsy,whichledtoa diagnosisofveryaggressiveprostatecancer. Ihadaradicalprostatectomyattheageof44!Withmyfamilyhistory,Ialways figuredIwouldendupwithprostatecancerinmy60'sor70's,butcertainlynotatage44! Afterthesurgery,thesurgeontoldmethepathologyresultsofmyprostateindicatedthat therewasevenmorecancerthantheyoriginallyexpected,andhaditnotbeenremoved;I WOULDHAVEBEENDEADWITHINTWOYEARS!IwasVERYfortunatethatthiswas caughtearly(becauseofthePSAtest),andIdidnotexperienceANYofthetypicalside effectsofthesurgery(impotenceand/orincontinence).PSATESTINGSAVEDMYLIFE! HadInothadthatPSAtestdone,Iwouldn’tbewritingthistoday.NeedIsaymore? Neil HavinghadseveralDRE’sdoneandalwaysbeingtoldeverythingfelt‘normal’I insistedthataPSAbedone.Thatinitialtestcamebackwithoutclarity,soIhadanother doneacouplemonthslater.Ithadgoneup.Another6weekslateranotherwasdoneandit hadgoneupsignificantly.Duetothisabiopsywasdoneanditcamebackwith4outof10 samplesshowingcancerouscells.IthenhadaRadicalProstatectomydoneandafter receivingtheresultsofthetestdoneonthecapsuleitwasdeterminedtohavebeena moderatelyaggressivecancer. Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page64 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. I’mconvincedthathadInothadaPSAdoneIwouldbebattlingacancerthatmay havebecomemuchworseormayhaveevenkilledme.Thatwas3yearsagoatage53. Don’tletPSA’sbepushedasideasiftheyarenothelpingdiagnosesuchadevastating disease. John Ourhealthdepartmentconductedahealthfair.APSAwaspartoftheblood screening.MyPSAcameback4.3.IfoundoutIhadprostatecancerandthistestcaughtit.I wouldbedeadnowwithoutthePSAtest.Anybodynotgettingscreenedatagefortyis playingisgamblingwiththeirlife. Bruce Atage50Iwenttomydoctorforaroutinecheck‐up.HesuggestedgettingaPSA test,Iagreed.AtthetimeIdidn’tevenknowwhataPSAtestwas.Thetestcameback4.00 andwastestedagainwhichcameback4.80.IwassenttoaUrologistwhereabiopsy confirmedthatIhadProstateCancer.IfIhadnothadthisPSATestIwouldnothave gottentheneededtreatment.MyPCisaggressiveandneededtotreataccordingly. Michael Atage57,IsoughtPSAtestingagainsttheadviceofmyprimarycarephysician.His digitalprostateexamhadfoundnoevidenceofalumpornodule.WithaPSAthathad increasedfrom3to5.5overthepastyear,Ihadabiopsythatshowedamoderately aggressiveprostatecancer.TherecommendationfromtheUrology/OncologyCenterwas forsurgery.Myprostatectomyrevealeda2cmtumorthatwasdescribedasverylarge. (2cmseemssmallbutisapparentlylargeforaprostatecancer.) Almostsixyearslater,Ihavehadnorecurrence.Icontinuetocheckregularlywith PSAtesting.PSAtesting,againsttherecommendationofmyprimarycarephysiciansaved mylife. Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page65 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. George I’maProstateCancersurvivor. IwassuremyhighPSAmeantnothingasnooneinmyfamilyhaseverhad ProstateCancer,butturnedoutwithaGleason6&Roboticsurgery.Atage66I’mtotally Cancerfree,butwouldhaveotherwiseneverknown.Iprettymuchowemyhealthylifeto thePSAtest. Lifeisgood. Anonymous Mybrother’slifewassavedbecauseofthistest.Hewasdiagnosedwithprostate cancerandbecausehehadbeengettingthePSAtestyearlyhiscancerwasfoundinits earlystageandsuccessfullytreated.Todayheiscancerfree. Anonymous IlostmyDadtoprostatecancer31/2yearsago.AlthoughhehadroutinePSA testing,theprostatecancerhecontractedwasaveryaggressiveone.Hefoughthardand boughtusanotheryeartogether.IfithadnotbeenforPSAtesting,Iwouldn’thavehad thatextratimewithmyDadthatIwillcherishfortherestofmylife. Anonymous Iwasdiagnosedwithmoderategrowthcanceratage65.Myprimarycaredoctor wasconcernedaboutmyPSAlevelandsentmetoaurologist.Thedigitalrectalexam showedaproblemwithmyprostate.Thebiopsyshowedcancerin9outof14samples andgettingclosetotheseminalvessels. Radiationwaseffectivewithminorsideeffects.IfIhadnothadthePSAandDREI wouldhaveproblemsnow5yearslater.Ihavenotpersonallyknownanywomanthat diedwithbreastcancer,butIhaveknown3menthatdiedwithprostatecancer.Twoof themenneverhadtheirPSAdoneuntilthecancerhadspread.Theymightbealivetoday iftheyhadhadthePSAandDREtestsdoneearlier.Theonewhohaditdone;sawalarge increaseinPSAfromoneyeartothenext.Hewasabletogettreatmentthataddedapain freeyeartohislife. Anonymous WithoutPSAtestingmyhusbandwouldhavediedalotsoonerthanhedid.It’snot thePSAtestingthatyouhavetoworryaboutit’ssomeofthedoctorsoutthere.Whatdo youwantlittleproblemsorLIFE? Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page66 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. Donald IhaveadearfriendwhoselifewassavedbyaroutinePSAtestthatledtoa diagnosisatage50ofafast‐growingcancer.Hehadnosymptomsofanykind,soabsent thePSAhewouldnothaveknownuntilprobablytoolateforthesurgerythatcamebefore metastasis,surgerythatsavedhislife. Mywife’sbestfriend’sbrotherhasessentiallythesamestory. Al AfterseveralincreasingPSAtests,Ihadabiopsythatdiagnosedmewithprostate canceratage54.Ihadalaparoscopicroboticprostatectomyandamnowsixyearscancer free.WithoutthePSAtestIwouldneverhaveknownIhadprostatecanceruntilitwasfar advancedandwouldprobablydieatanearlyage.ItisunconscionablethattheUSPTFis consideringrecommendingagainstPSAtestingwithoutanyalternativescreening recommendation. Louis PSAtestingsavedmylife!Iinitiallywastestedin1993,withfollow‐upin1994.My physicianaskedmewhetherornotIwantedtobe“proactive”andIsaidyes;Ihadno symptomsbutmyPSAwasintheabnormalrange.BiopsyconfirmedthatIhadprostate cancer.MywifeandIdecideduponsurgery.Ihavehadundetectable PSAscoressince(exceptforonefalse‐positivethatwasalaboratoryerror),andam 18yearspost‐surgery.MyGleasonscorewas8.WhatIhavesubsequentlydeterminedis thattherehasbeenaprostatecancergenetic“relationship”inourfamily;myfatherand myfather’sbrotherhasdiedfromprostatecancer.Ihadanexceptionalprimarycare Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page67 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. physicianandurologistwhoworkedtogetherwithme,explainedalltheissues,andletme goforasecondopinion…andIwentwithmyurologist’srecommendationforaradical.I haveNEVERregrettedmy/ourdecision;mypost‐surgicalsymptomshavebeenminimal. TorecommendagainstPSAtestingisunprofessional.Forthosephysicianswhoare arguingagainsttesting—justwaituntiltheyexpresssymptoms—andthenitmaybetoo late!IamaUniversityscientist.HavingPSAtestingavailabletomesavedmylife! Peter WithoutPSAtesting,mycancerwouldhavenotbeencaught.Whiletherearereal riskstoPSAtesting,biopsy,andtreatment…inmyopinion,testingisknowledgeand shouldcontinuetoberecommendedandpaidforbyinsurance.Thisisparticularly importantforyoungermenwhowilllikelynotoutlivePCa. Whenabetter,moreaccuratePCatestisavailable,thanswitch.FornowPSAisthe bestindicatorandshouldbecontinued. Anonymous Attheageof46Ihadaphysical,andforthebloodwork,mydoctorchecked“PSA”. ThiswasmyfirstPSAtest,becausetypicallytestingstartsat50.MyPSAwashigh, remainedsoinasecondtest1monthlater,thenafollowupbiopsydetectedProstate Cancer.I’mnowapproaching5yearscancerfree.IfnotforthePSAtest,Iwouldhavenot knownuntilmuchlater,riskingdiseaseprogressionbeyondmyprostate. Jeff PSAtestingsavedmylife.Fiveyearsago,Iwasahealthy46year‐oldguywho exercisedregularlyandwenttoregularcheck‐ups.MyDRE’swerealwaysunremarkable andIhadnosymptomssuggestingtherewasanythingwrongwithme.OnedayinAprilI visitedalocalhealthfairsponsoredbyaDenvernewschannel. Beingapsychologist,IthoughtIcouldpickupsomeinterestinginformationformy clients.Idon’texactlylikeneedles,sowhatpromptedmetodecidetogetmyblood checkedIwillneverknow,howeverIhavetoadmitIwasabitrelieved,whenIwas turnedawaybecauseIhadnotfasted12hoursfortheglucosetest. WhatmakesmystoryevenstrangeristhatIwenthomeandresearchedwherethe healthfairwasgoingtobethenextday.Ifastedtherequired12hoursandtraveledto anothercitywhereIagainstoodinlineandhadmyblooddrawn. Afewdayslater,Ireceivedacallfromaseeminglydistressednursewhoinformed methatmyPSAwas23.4andthatIneededtoseemydoctorimmediately.Ididn’teven knowwhataPSAwas,atthattime,butIeventuallylearned.Boy,didIlearn.Furthertests andabiopsyconfirmedprostatecancerwhichhadspreadtoaseminalvesicle.Ihad Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page68 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. surgery,radiation,andtwoyearsofhormonetherapyandthissummerIcelebratedfive yearsofbeingcancerfree.IamalivebecauseofaPSAtest. Doug In2004,IhadaPSAtest.Theresultswere10Nanograms/ML,higherthanlast year’sresult.IsawaUrologistwhoscheduledaprostatebiopsyforthefollowingMonday. ThePSAdoneagainattheUrologist’soffice,andwasevenhigher. BiopsyresultswereconsistentwithaDXofProstateCancer.GleasonScore=6.The urologistsaid,“AGleasonScoreof6isagoodscoretohave.”ThePSAsavedmylife; otherwise,Imightbefightingcanceratthistime.Ihavehighbloodpressure.Idon’tneed prostatecancertoo. George MyfatherdiedofprostatecancerbeforePSAtestingwasavailable.Duetohis cancerthechancesofmycontactingthisdiseasearedoublethatofthegeneralpopulation. Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page69 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. SoforpeaceofmindifnothingelseIgetannualPSAtestingwhichIhavestartedplotting duetomyrisingPSAnumbers. Anonymous PSAsavedmylife.Ihadnosymptomsofprostatecancer.EvenafterthePSAresults itwasnoteasytodetectthecancerthroughothertests.Giventhatthecancerwasnot totallyencapsulatedandhadtraversedtheprostateliningIwouldnotbealiveifithadnot beenforthePSAwarning. Andrew Imagineat46yearsoldhowshockedIwastofindIhadprostatecancer.Itwas onlythroughmyworkphysicalthatincludedaPSAtestthatindicatedtherewasa potentialproblem.Thedigitalrectalexamprovedtobeunremarkable,sothePSAwasthe onlyindicator.Ihadnoprevioussymptoms.Iwasjustthereformymandatoryannual physical.Well,afteratriptotheurologistandanotherPSAtestIwasscheduledfora biopsywhichultimatelyshowedcancer. Ihavenofamilyhistoryofprostatecancer,soifitwasn’tformyworkphysical,I wouldn’thavegottenaPSAtestuntilIwas50andwhoknowshowfarthecancerwould havegottenatthatpoint.AsItypemystoryIamhappytosaythatIamcancerfree.Ifit wasn’tforthePSAtestIwouldbewalkingaroundwithprostatecancerrightnow.I,my wifeandmythreechildrenareallconvincedthatthePSAtestsavedmylife. Donna I’mwritingformyhusband.HepassedawayfromprostatecancerlastDecember. Hewasahealthyoung48yeardoctor.Hedidhislabeveryyearandhadacomplete physicalexam.Onhis47thbirthdayhisPSAwasunder4.Byhis48thbirthday,hisPSA was33.YesmendoneedtohavetheirPSAdoneandthescreeningshouldstartat40. Wehavethreegrownchildren.Twoaremenintheirearly20's.Theywillstartat 30havingaPSAtest. William PSAtesting,Ibelieve,savedmylife.IwastestedandfoundmyPSAlevelwas6.6.I alsohadabiopsyandwasscheduledforsurgerybuthadaheartattackfromwhichI nearlydied.Idecidedonwatchfulwaitingconcerningthecancer.PSAwasstablefor3 yearsuponwhichtimeitsuddenlywentfrom6.6to10.4.Ihadnervesparingsurgery6 weekslater(1998)andhaveshownnofurthersigns.Ihaveexcellenturinecontrol,no incontinencebutcannotattainanerection.MyPSAisnowundetectableforwhichIam mostgrateful. Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page70 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. Phillip Thischeaptesthassavedthelifeofmybothmybrotherandmyselfandlackof testingtookmyoldestbrother’slife. BothmybrothersliveinEnglandwhereroutinetestingisnotdone.Becauseofthismy oldestbrother’sprostatecancerwasdetectedwaytoolatetotreateffectivelyandhedied withinafewyearsofdiagnosis.Afterthisexperiencemyotherbrothergottestedandwas foundtohavePCalsoandisdoingwellafter7years.IFHEHADNOTINSISTEDONBEING TESTEDHEMIGHTHAVEENDEDUPLIKEOUROLDERBROTHER! Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page71 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. James Iwouldbedead,ifIfollowedthe“watchfulwaiting”advice.MyPSAwasonly slightlyelevated,butthebiopsyshowedintermediatecancer,7outof10ontheGleason Scale.ThePSAwascertainlynot“falsepositive”inmycase,andlikelysavedmylife.Isn’tit bettertoerronthesideofcaution? George Iama15yearsurvivorwithoutinvasivetherapyuntilCryo2.5yearsago.Iamnow 65yearsofageandwithoutPSAteststohelpmemonitormycondition;IdonotfeelI wouldhavehadthesameoutcomeorsuccessfightingthisdiseaseasI’vehad.Iamstill monitoringmyPSAonaregularbasisandpayingforthetestsmyselfonthemajorityof times.ObviouslyIfeelitisaninvaluableresourceinthebattleagainstPC. Alfonso Ibelievemystatementputsprostatecancerintherightperspective:NFL viewershipis67%maleand33%female,however,thismonthNFLplayersareladenin pinkuniformapparelandaccessoriestopromotetheawarenessofBreastCancer. Statistically,individualswithprostatecanceranddeathscausedbyprostatecancerare rightinlinewiththenumbersforbreastcancer.Evenmorecrucialisthebehaviorof maleswhenitcomestogettingcheck‐ups.Mostmendon’tgotothedoctorforroutine check‐upsevenwhentheyhaveailmentsofanyvariety. Anonymous IhadneverheardofaPSAtestwhenanursesuggestedthatIgetone.Itested positiveforprostatecancer.Iamstillalive18&1/2yearslater(October2011)becauseof earlydetectionandthegraceofGod.Iknowthatearlydetectionsaveslives.Ialsobelieve thattheefforttoreducetestingisaMedicaldoctor’sschemetotreatmoreadvanced patients(makemoremoney).Ialsobelievethatthemedicalcommunityisnotactively searchingforcures(intendingtomakemoremoney),causingmanymaleswithprostate cancertodiebeforetheirtime. Judith I’mthewidowofafinehusband,fatherandgrandfather–greatlymissed.Because ofanincreaseinhisPSA,hehadabiopsywhichshowedcancerandaprostatectomyin August2004.Thedoctorwasconfidentthathe’dgottenitallandrecommendedno furthertreatment,otherthanmonitoringthePSA.Threeyearslater,itincreasedto1from negligible,andnoonesoundedanalarm.Threemonthslater,itwas123.Severaltests, includingaprostascintdidn’tshowanycancercells,andanappointmentwassetupfor THREEMONTHSLATER.Thatappointment,hisPSAwasover1200andthecancer Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page72 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. hadspreadtobonesandliver.Obviously,Iregretlettinghimleavethatday,threemonths earlier,withoutaddressingtheissueofaPSAof123.Iquestionedthedoctoraboutit: “shouldn’thebetreatedevenifnocancercellsareevident?”“Didn’taPSAthathigh indicatethatsomethingiswrong?”Hewasreassuringandhowwewantedtobelievethat everythingwouldbeokay!!WhenBob’sPSAincreasedfrom.00‐toover1.00,ifwehad paidattentionandinsistedonclosermonitoring–nevermindifinsurancewillpayfor morefrequenttests!–MaybeBobwouldstillbewithusoratleasthavehadmoretime– toseenewgrandchildrenandgreatgrandchildren. Thebestdoctorsintheworldinstateofthearthospitals–stillmakemistakes; they’reonlyhuman.Patientsandfamilymembersneedtobeinformedandtheirownbest advocates,seekingsecond,thirdandfourthopinions,ifnecessary Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page73 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. Maria My49yearoldhusbandwentinforhis“WellnessExam”inJune,2011andhisPSA camebackat57.OnemonthlaterhewasdiagnosedwithStage4ProstateCancer.His cancerhasalreadyspreadtohislymphnodes,bladder,nervebundles,andseminal vesicles. HadhisdoctorfolloweduponhisPSAtestof4.8in2006,myhusbandwouldnot belosinghisbladderandhisprognosiswouldbemuchbetter. TheproblemisNOTwiththePSAtest!Theproblemsarewithdoctorsnot educatingtheirpatientsandpatientsnotbuildinguponthateducation. Myhusbandhadnosymptomsotherthanamildlyweakenedurinestream! IfhehadnothadthePSAtest,hiscancerwouldstillbegrowingoutofcontrolwithoutus evenknowing. ProstateCancerisNOTanoldman’sdisease!Nooneinmyhusband’sfamilyhas hadProstateCancer,sotherewasnoreasonforhimtothinkhewasathighrisk. ThePSAtestpossiblysavedmyhusband’slife.Anincompetentdoctorin2006 allowedfurtherharmtocomemyhusband’sway,notthePSAtest! Anonymous MyfatherlosthislifeasaresultoffailingtohaveregularPSAtest.Mygrandfather diedbeforeavailable.Nomatterwhatissaid,annualPSAandexamsaveslives. Gary Myfatherdiedfromprostatecanceratage65.IstartedcheckingmyPSAlevelsat age40.In2006mylevelsjumped3pts.andabiopsyconfirmedtheworst.Twomonths laterIhadaradicalprostatectomyandI’veneverlookedback.ThisyearIraninthree triathlons.I’mconvincedthatthePSAtestingidentifiedmycancerintimetosavemylife. Robert Iwas49yearsofage.MyPSAwas4.0(buthaddoubledinlessthan2years).The biopsyindicatedaGleasonScoreof6andcancercellsneartheperipheryoftheprostate. ShouldIhavetriedwatchfulwaiting?Whoonthepanelmakingtherecommendations wouldhaveoptedwatchfulwaiting? Ioptedforsurgeryandhavebeencancerfree(PSAtestsnotindicatingany activity). Bob Uponbeingdiagnosedwithprostatecancer,Iwassenttoaurologicalpracticewho immediatelyrecommendedabiopsy.Followinga9.0PSAandadmonitionsfromthe Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page74 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. doctorsafterthebiopsy,Iwentthroughalmostayearofseeingallsortsofphysicians,all ofwhomrecommendedsurgeryorradiation. Thesedidn’tfeelrighttomeand,asIbegantoresearch,Ifoundpeoplewhohad achievedagoodresultfromsupplementsandothernon‐surgical,non‐invasivetreatment. Onlymonthsafterconsultingaphysicianwhoputmeonanumberofsupplementsand onlytwoprescriptiondrugs,changedmydietandseveralothercommonsensethings,my PSAregistered3.8.SincethenthePSAreadinghasvariedbetweenthatat5.6.Iam convincedthatImaywellhavebeenmuchworseoffasawholepersonifI’dhadthe surgery. Seemstomethatthere’snothingwrongwiththePSAitself.It’sonlyabloodtest. It’swhatmanyonthemedicalcommunitydowithitthatiswrong.Havingbeenthrough myfouryearexperiencenow,I’mgladtohavethePSA.Asmydoctorhassaid,“Thereare manyreasonsforyourPSAtogoup,manyofthenegative,butonlyonereasonforitto comedown.Something’sgettingbetter.” It’snotthetest;it’sthekneejerk(moneyearning)reactionsofmanydoctorsthat causethenegativeconsequences. Lee Mydadwasdiagnosedatage50.Iwasdiagnosedat46.BecausemyPSAwas3.9, myGPreferredmetoaurologistforabiopsy,whichconfirmedcancer. Ifitwasn’tforthePSAtest,Iwouldhavebeeninbigtrouble.BythetimeIstartedproton therapy4monthsaftertheoriginalPSAtest,myPSAtestedat5.3.Mycancerwas aggressive. Yes,thereareanumbervariableswithaPSAtest,butwithagooddoctor,proactive patient,andaccuratetesting,THISTESTSAVESLIVES. Tony Iwas44in2006whenmyprimarycarephysicianprescribedaPSAtestinmyfirst physicalsinceIhadturned40yearsold.MYPSAindicatedaveryhighreadingat19.8. Afteraseriesoftestsandsurgeryitwasdeterminedmycasewasadvancedprostate cancerbutstilltreatable.Ihavebeeninremissionfornearlyfiveyears.Ifirmlybelieve thathadmycancerremaineduncheckedbythePCPonthatdaythatIwouldbeeither deadordealingwithincurablemetastaticprostatecancertoday.Ithinkthatthisis indisputableevidencethatscreeningsaveslivesand/oratveryleastextendslives. Elliot Duetofamilyhistory,IhadseveralyearsofPSAtestingeveryotheryearstartingat age39.MyPSAjumpedto4.0atage45,andwasclimbing20%peryearatage46.A biopsyshowedGleason7cancer.Iamnow14monthspostroboticsurgerywithaPSAof Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page75 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. 0.01!Myurologistwasveryrealisticabouttherisksofincontinenceandimpotence associatedwitheachtreatmentoption.Hewasveryclearthaterectilefunctionwouldnot improve,andwouldlikelydecline.Ihavenoincontinenceproblems,butIdohave impotenceissuesrequiringinjectionsforintercourse.Giventhefranknessofmydoctor,I amoverallverysatisfiedwithmytestingandtreatmentexperience.Iwatchedmyuncle dieofPC,anditwashorrible. Tometheerectileissues,thoughfrustratingattimes,areanacceptablepriceto payfortheopportunitytoavoidthatdeath.IfirmlybelievethatthePSAtestingsavedmy life. Bill MyPSAwentup2.5butbecauseitdidnotpassthecomputertestof4.0myregular doctorsdidnothing.Theyonlywentthroughthemotionsofthedigitalrectalexam.Bythe timeIgottoacertifiedUrologistitwastoolate.Ihadthesurgeryandtheradiationbutit wastoolate.Myregulardoctorsthanbackdatedmymedicalrecordsandnowclaimthat theytoldmethatIhadcancer3yearsearlieranddidnothing. Thisiswithoutanybiopsyorpathologyreport. Kenneth Iwasgoingtothebathroomfrequently.Had“start/stop”issues.OnawhimI mentionedthistomyMD.PSAat21.6.Then,yPSAroseto27.IfIhadwaitedalittle longer,Imightnotbeherenow.I’mnotasurvivor,yet.I’mundertreatmentforstage4 prostatecancer.Mysonhastobetestedatage42.ThePSAtestMUSTbekeptformen. Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page76 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. Terry WehaveafamilyhistoryofcancersoIfeltthePSAtestswereimportantforme.I hadanannualPSAtestsincemyearly50saspartofmyannualphysical.Theresultwas alwaysinthenormalrangebutincreasingslowly. Atage59myPSAincreasedabout50%.MyurologistorderedanotherPSAthree monthslater.MyPSAwasupanother30%butstillinanormalrangeat3.9. TherisingPSAconcernedmyurologistandhesuggestedabiopsy.Aftersomediscussion andconsideration,Iagreedtohavethebiopsy.12coresweretakeninapainfulbutshort procedure.Onlyonecorecontainedcancer.TheGleasonscoreforthecancerwas4+3. Thisearlystagecancerwaslocatedonlyintherightprostatelobe. Myurologistrecommendedradicalprostatectomy(RP).HesaidthatIwasinno riskofdyingsoon.Heexplainedthatprostatecancerisusuallyslowgrowingbutthe Gleasonscoreof4+3indicatedmycancerwasaggressiveandwouldbelikelytospread outsideoftheprostateifnottreated.Theprostatectomywasrecommendedtoimprove myoutlooktenyearsandmoreinthefuture.HadIbeen10or15yearsolder,thedoctor’s treatmentrecommendationmayhavebeendifferent.Theremayhavebeennotreatment atall. Istartedresearchingoptions.Theavailableliteraturewasallovertheplace regardingappropriatetreatment.Imetwithtwootherurologists,radiationandmedical oncologists,andothermembersofamulti‐disciplinarycancerteam.Allofthem recommendedRP.IeventuallydecidedtohaveRPbutwaitedforsevenmonthsdueto otherhealthconcerns. IhadsurgeryinJuly2011.Thepost‐operationpathologyreportindicatedthe cancerwascontainedintheprostate.Nonewasfoundinthelymphglandsorsurrounding tissue.However,thecancertumorhadspreadtotheleftprostatelobe.10%ofmy prostatewascancerous.Thisindicatedanaggressivecancergrowth. Ihaveeveryreasontobegratefulforearlydetectionandtreatmentofmyprostate cancer. Nooneknowshowlongwouldithavetakenforthecancertospread outsideofmyprostate.Ifithadspreadoutsidetheprostate,treatmentwouldhavebeen muchmoredifficultandprolonged.IfIhadn’thadPSAtesting,thecancermayhavegone undetecteduntilitwastoolatetoeffectivelytreatit. I’mstillrecoveringfromsurgery.Ihaveslighturinaryincontinenceandwearapad forprotection.Ialsohaveerectiledysfunction(ED).Hopefullybothofthesesideeffectsof RPwillclearupovertime.Eveniftheydon’t,IhavenoregretsaboutchoosingRPtotreat mycancer. Judy Myhusband’sPSAhadbeensteadilyrisingbuttheresultsweresimplyfiledinhis chartsinthedoctor’sofficeandignoreduntilhebeganexperiencingsymptomsthatcould notbeignored.The“fingertest”atthedoctor’sofficeleftlittleneedforanotherPSAtest; thedoctorsenthimdirectlytotheurologistwhoimmediatelyscheduledabiopsythat Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page77 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. revealed“advancedaggressiveprostatecancer.”Wesoonlearnedthatthereisalong historyofaggressiveprostatecancerinhisfather’sfamily:atleasttwo,perhaps3uncles andhisgrandfatherhadhadit.(HisownfatherdiedofHodgkin’sattheageof50,“too young”togetprostatecancer.) HisGleesonscorewastoohighforradiationseeds,andattemptedsurgeryproved unsuccessfulasthetumorshadalreadyspreadoutsidetheprostateandwere compromisingbloodvesselsandnervesinhislegs.ResortingtoPlanB,heoptedto provideasmuchhelpaspossibletothemedicalfieldbyparticipatinginexperimental treatment.Foreightyearsheunderwentradiationandninedifferenttypesof chemotherapy,bothon‐andoff‐study.Hispositiveattitudeandlovingdisposition disguisedhispainanddiscomfortasthediseasegraduallydiminishedhisphysical abilities. Webothbecameavid(ifprivate)advocatesofPSAtesting,encouragingmento“get tested,learntheirnumbers,andknowwhattheymean.”Iamoutragedthatthemedical professioncanevenconsiderlimitingordoingawaywiththistesting.Iknowthatitisnot alwaysapreciseindicator,butitisacrucialindicatoranditneedstobedoneregularly. Iwillneverknowifmyhusbandwouldhavelivedlongerifwehadlearnedofhiscancer sooner,butIcertainlywantmysonsandgrandsonstobetestedregularly.Earlydetection providesagreateropportunityforcrucialpreventivemeasures. Theeightyearswehad(afterhisdiagnosis)werepreciousbeyondmeasure.His attitudeattheoutsetwasthathedidnotwanttospendhisremainingtimefocusedon whatcouldorshouldhavebeendone–itwouldnotchangethecircumstanceswefaced. Buttherewillalwaysbethatquestioninthebackofourminds:“Whatifwehadknown earlier?” Tony Onaroutinephysicalexamin1997,atage56,Iwasdiagnosedwithprostate cancerfollowingaroutinePSAtest.Fourteenyearslater,Iamstillbattlingthedisease,but becauseofanearlydiagnosisandtreatment,Ihavesurvived14yearsandmyqualityof lifehasbeengood.Atthetimeofthediagnosis,theurologisttoldme–”donothing,andyou willbedeadin5years”.Ihadnothadanysymptomsandwouldnothaveknowntohave anytreatmenthaditnotbeenfortheroutinePSAtest.Thetestmostlikelysavedmylife. Manny Inanannualcheck‐upmyPSAlevelwasa9anditcontinuedtorisetoa14beforeI hadmysurgery.Ihadanaggressivecancerwhichspreadtooneofmylymphnodes.Prior tomytesting,Ihadnosymptomsandfeltfine.Myprostratewasthreetimesthenormal size.AftermysurgerymyPSAwasat4andcontinuedtorise.Mydoctorrecommended Hormonetherapy.TodaymycurrentPSAis0.36.WithoutaPSAtest,Iwouldnothave Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page78 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. beenconcernedaboutProstatecancerespeciallysinceIhadnosymptomsordiscomfort.I believethistestinghelpedidentifythecancerbeforeitwastoolate. Thomas In2008,Ihadmybiopsy,whichconfirmedPCa,andIhadadaVinciprostatectomy on10/10/2008.MyprimarycareproviderhadbeenmonitoringmyPSAonaregular basis,andthefactthatitincreased,eventhoughitwasnotveryhighinabsoluteterms, signaledtheneedforabiopsy.Inaperiodofaround18months,ithadgonefrom2.3to 3.7,anincreaseof1.4.Hehadtoldmethatanincreaseof.75in1yearwouldbe noteworthy. Ihadnosymptoms,andithadnotbeendetectablebyDRE,soPSAscreeningisthe onlywayitwasdetectedasearlyasitwas. Jon ThePSAtestisaninexpensivewayofprovideusefulinformationindetermining thelikelihoodofhavingprostatecancer.AfterlearningthatmyPSAlevelwaselevated,I hadabiopsy,whichindicatedIhadprostatecancer.Aftermuchconsideration,Ichose radiationandseedimplant,asawayoftreatingit,whichwassuccessfulinmycasewith relativelyfewsideeffects.InowusePSAtestingasayearlypost‐treatmentmonitor. ThemainargumentagainstPSAtestingisthatitcanleadtounnecessarytreatment thatcancausemoreharmthangood.TheanswerisnotlessPSAtesting,butmore educationabouttreatmentoptionsandpotentialbenefitsandsideeffectssothateach mancanmakeamoreinformedchoice. Jim PSAtestingmayhavesavedmylifeandgivenmedecadesofmoretimetospend withmyfamily.IhadveryhighPSAreadingswhichpromptedaseriesofbiopsiesthat foundGleasonscore7.5cancercells.Nowthebigdecision:takecareofitortakethe chancethatthecancerIhadwasnotoneoftheaggressivetypes.PlayingRussianroulette withmylifewasnotagoodchoice,soIhadthesurgery.Ihadsomepost‐surgeryissues, butthetrade‐offwasworthit. WithoutPSAtesting,Iwouldhaveneverknownaboutthepotentialforaggressive cancerwithinmeuntilithadreachedthepointofkillingme.If5outof20prostate cancersareaggressive,thenitmighthavebeena20%chanceofitkillingme.I’mgladI knewthatIhadachoicetomake. Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page79 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. Mike Asaprostatecancersurvivorwhohadaradicalprostatectomythenhadarising PSAaftersurgeryandwentontohavesavageradiation,howwouldIhavebeenableto tellmycancerwasgrowingagainifnotforfrequentPSAtesting.Andnow71/2years aftermysurgeryIstillneedtomonitormycancerthroughPSAtestingevery3months, andthisseemstometobethemostcosteffectivemeansofdoingthat. Asimplebloodtest. TheproblemseemstobePSAtestingleadstoovertreatment.That’snotduetothe PSAtestitself,that’sduetothemedicaldecisionmakingprocessafterwards.PSAtestingis agreatwarningtool,andabsolutelynecessaryafterprostatecancertreatmenttomonitor recurrence.Whenthetreatornottreatdecisioncanbeaccuratelyassessedandonly aggressivecancerstreated,perhapsPSAtestingwillbevindicatedandregainitsplaceas thebestmostcosteffectivesimplestearlywarningmonitorforprostatecancer. Linda Myhusbandatage62wasdiagnosedwithprostatecancerwithaPSAtestthat showedahigherreadingthantheyearbefore.Itwascaughtbeforeitwasoutofthe prostate,andafteraRadicalProstatectomy,itisnow12yearslaterandheisfine.ThePSA testisnotperfectbutitistheonlytestthereisrightnow.Bytestingearlycancercanbe detectedbeforeitisoutoftheprostatecapsuleandspread. Therewasnofamilyindicationofprostatecancerashisfatherlivedtobea101 yearsold.Myhusbandwasfeelingfineasprostatecancerhasnosymptomsintheearly stages.OnlyaPSAtestandRDE,andthenabiopsyfoundthecancer.Itiseasier(and cheaper)totreatthecancerintheearlystages. Bob ThePSAtestisavital1ststepinthedetectionofprostatecancer.Duringmyyearly physicalmydoctorsawmyPSAhadincreasedmarkedlyfromtheyearbefore.Iwenttoa urologistwhoupondigitalexamfeltalumponmyprostate.Asubsequentbiopsyshowed definitecancer.AfterhormonalandradiationtherapyIhavebeencancerfreefor8years. IfIhadnothadthatPSAtestasafirststepIwouldnothavehadacluecancerwasthere. PSAalonewouldnotbeconclusive,butitisthebestwaytofindoutifthereisapossibility ofcancerandthefollowuptestscanconfirmordenyit. John PSAtestingsavedmylife.At61IhadaslightincreaseinmyannualPSAtestlevel andmyprimarydoctorthoughtitwouldbegoodforanurologisttocheckitout.After severalmonthsofmonitoringbythedoctor,abiopsywasperformedandcancerwasthe diagnosis.Atthehospital,itwasdeterminedthatremovaloftheprostatewasthebest Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page80 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. actiontotake.Uponremovalandtesting,itwasdeterminedthatifIhadnothadthe operationwhenIdid,thecancerwouldhavebeguntospreadtosurroundingorgans. Fiveyearslater,Iamcancerfree. Anonymous AStheresultofaroutinePSAbloodtest,myhusbandwasdiagnosedwithprostate cancerwithaGleesonof8.Hehadradicalsurgerywithin2months.Heiscancerfreeand doingverywell.Thetestsavedhislife. Themostencouragingfollowuptohisstory,tome,isthatbyhavingaPSAtest yearly,wewillknowifthecancerhasreturnedanywhereelseinhisbody.Anycancers cellswouldstillshowupinthePSAbloodtestasprostatecancer.Idonotknowofany othercancerthatwouldshowupthatquicklyoraccuratelyinabloodtest. Anonymous Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page81 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. 3yearsagoonmyregularyearlyphysicalmyPSAindicatedajumpfrom2.4to4.8ina years’time.IwasreferredtotheUrologistforinvestigation.AtthetimeIwas57andhad alonghistoryofProstateCancerinmyfamily.Grandfather(diedofPCa)Father.3uncles onmyDad’ssideand2firstcousinsonmyDad’sside.Oneofthemdiedattheageof43 fromPCa. AbiopsywasdoneandcamebackpositiveGleason3+4andhighgradePIN. DiscussedtreatmentsandIdecidedthatthebestbetisgetitoutofmybody.3yearsout myPSAisZerotheonlydownsideisED.WhichIdonottakelightly.IknowthatthisPSA savedmefromaterribleprogressionofcancerinmybody.Thedecisionoftreatment shouldbeadecisionbetweentheDr.andthePatientnotagovernmentalprocess. Bythewaymy34yearoldsonalreadyhasabaselinePSA.Heknowstowatchit andkeephisDocintheknow. Alex ThePSAtestisourmostvaluabletooltodeterminetheprogressionofprostate cancer(PC).MyPCwasdiscoveredduringaroutinephysicalwhichincludedaPSAtest.I was54yearsoldandhadsymptomsIattributedtoaging(difficultyurinating)which turnedouttobehighgradePC(Gleason9).PAStestingshouldcontinue.Theresults shouldbehandledtowardsthepatient’sbenefitratherthanthedoctor’senrichment. Anonymous MyhusbandhadaroutinetestofhisPSAduringhisannualphysicalinDecember of2002.Itwas6.6atthattime‐doublewhatithadbeenthepreviousyear.Heimmediately scheduledabiopsywhichwaspositive.Wetookseveralmonths,didatremendous amountofresearch,andawholelotofpraying.Aftertalkingwithbothamarvelous radiologistaboutseedimplantandanequallymarvelousurologist,wedecidedon surgery. Myhusbandhadsomespreadfrombeyondtheprostatecapsuletotheseminal vessels.Heisalive,9yearslater.HisverylowPSAsignaledwhatwehavesincefoundout isanextremelyaggressiveformofprostatecancer.Herecoveredverywellfromhis surgeryandiscompletelycontinent.Sincethenhehassalvageradiation,hormone therapywhichfailedashewasandrogenresistant, Provenge,radiationforbonepainasaresultofmetastasis,andhewillbestarting docetaxelinaweek.Icansaywithoutashadowofadoubtthatifhehadnothadthat routinePSAandthefollowingbiopsyattheageof57,hewouldbedeadnow.Itis completelyrecklesstonolongerhaveaPSAdoneasapartofroutinephysicals.My husbandwaswithoutanysymptomsthatwouldhavesignaledanyproblems.Yes,the biopsywasanunpleasantexperiencebutdeathismuchmoreunpleasant.Ifdoctorsneed moreeducation,educatethem. Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page82 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. Ifpatientsneedmoreeducation,educatethem.Encouragementotalktoeach other. PSAtestinghasgivenmyhusband9yearsoflife;ithasgivenme9yearsmorewith theloveofmylife;ithasgiven2additionalgrandchildrentimewiththeirfavoriteguy.We maynothavemuchmoretimeleftashisPSAdoublingtimeisnow1monthbutwhatajoy thelastyearshavebeenandwhatajoythetimethatisleftwillbe. Jerry WithoutthePSAtestIwouldhavebeenwalkingtimebomb,MyPSAlevelwent from1.5to5.8inoneyear.HadsurgeryonAugust3rdofthisyear.WithnoPSAtestI wouldneverhaveknownuntilitwastoolate.EliminatePSAtestingislikedoomingmany mentoanagonizingdeath. Brian WhileImyselfhavenotexperiencedprostatecancer,mydadandoldestbrother have.Inbothinstances,thecancerwasfoundafterroutinePSAtesting.Mybrotherchose totreathiscancerwithradiationtherapywhereasmydad,inhis70'swhenhiscancer wasfound,chosehormonetherapy.Neitherofthemarecompletelycancerfreeandthey continuedtofollowupwiththeirdoctorsandmonitortheirPSAlevels.Iwillturn40this yearandfullyintendoninsistingmydoctordoaPSAtestatmynextphysicalexam.Iwill makesureallofmyfriendsandfamilydoesthesame. Themedicalcommunity(andsocietyingeneral)providesaverysharp,double‐ edgedswordtomeninregardtotheirhealth. Ononehand,theyarecriticizedandevenridiculedfornotpayingenoughattention totheirhealth.Yet,ontheother,themedicalcommunityviewsmenassecond‐classto womenandwomen’shealthconcerns.Howmanyhospitalscanyounamewithactual physicalMen’sHealthCenters?Menviewthismixedmessageasnagging(whichis ignored…)becauseiftheirhealthtrulywereinjeopardy,surelytherewouldbe organizationsandprogramsinplacetohelpsupportit. Anonymous Atage61,IbecameapatientwithPCa[18bonemetastases]withonlyADTas treatment,justbecausemyPSA[turnedouttobe50]wastestedforthefirsttime,having nocomplaints.Withoutthisand1yearlaterImighthavefalleninadisastrous complication.Iwouldpropose:everymanfromage50every5yearsaPSAtest. Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page83 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. Paul ThePSAtestwastheinitialwarningthatIhadaparticularlyaggressivetypeof prostatecancer.ShortlyafterabiopsyIhadprostatesurgery,atwhichtimeitwasfound thatthecancerwasevenmoreaggressive(neartheupperendoftheGleasonscale)than originallymeasuredinthebiopsy.Thatwasfiveyearsago.IfeelfortunatethattodayIam stillcancer‐free. Rick DREwasfine.PSAwentfrom4to5.Internistsentmetourologistforbiopsywhich waspositive.Didexternalradiation.FouryearslaterPSAstartedtoriseto1.Metstolung &slightlytobone.Wouldn’thaveacluewithoutPSAtest. Anonymous IfitwasnotformyPSAtest,IwouldhaveneverfoundoutIhadprostatecancer, myMD,didnotperformrectalexamsuntilafteryouwere50,Iwas48whenthey discoveredmycancerandwithoutthePSAmycancerwouldhavebeenmuchfurther alonguntilitwasdiscovered. Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page84 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. Anonymous Asa63yearoldmanwithfriendswhohaveprostatecancer,thePSAtestgivesme someassurancethatIamstillcancerfree. Anonymous During2008IhadaPSAreadingof6.2.SoonafterIhadacompleteblockageand couldnotemptymybladder.Followingextensiveexamandtestingdoctorsaidhedidnot thinkitwascancer.Late2008IhadaTransurethralResectionoftheProstate.Everything workedoutfine(nocancer).MybodyhasfewsideeffectsandmylastPSAreadingwas 2.6. Anonymous ThePSAtestingidentifiedmyprostatecancerwhichledtoroboticsurgeryand removalofthecancer.IamcancerfreenowforthreeyearsbecausethePSAtesting allowedmetotreatitearly.Itsaveslives.Yes,theremaybesomeinstanceswheretesting leadstounnecessarybiopsiesetc.,buttheseconsequencesarefarintheminorityand worththeriskuntilabettertestcanbefound.BeforemycancerdiagnosisIactuallyhad twopriorbiopsiesbeforethecancershowedup.Itwasabituncomfortablebutnotreally abigdeal.BetterthangoingtothedentistIsayasacomparison. Istillcan’tbelievethatPSAtestingisbeingquestioned.Manymenwillsufferthe consequencesifthisreductionintestingbecomesareality. Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page85 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. Del Atage71myPSAhadspikedto6.2.Thissuddenchangealertedmetofurther investigationinmyprostatehealth.AfeePSAtestrevealedascoreof13.7andthena biopsyrevealedaGleasonscoreof7(4‐3)andthentoIMRTradiationtreatments.Today myPSAis0.63.Untilsomethingbetterisdeveloped,PSAscreeningisthebestwarning signalwehaveforProstateCancerandshouldcontinuetobecoveredbyHealthInsurance carriers. Robert MyhistorywiththePSAtestbeganabouteightyearsago.Myurologistnotedthat myPSAwasrisingandIwasalsosufferingfromprostateenlargementthatwasforcingme togetupfiveorsixtimesanight.WediscussedallofmyoptionsandIdecidedtohavea TURPdone.Ihadtheprocedureandwhentheyanalyzedthematerialtakenfrommy prostate,theyfoundcancer.Aftertheprocedure,myPSAdroppedbelowzeroandithas stayedthereeversince. WithoutthePSA,Iwouldnothavediscoveredthecancer,norwouldIhaveany indicatorsthatwouldsuggestthatIhadit.Mycurrenturologistthinksthatitislikelythat theTURPprocedureremovedthecancerentirely.Regardless,InowhaveaPSAdone everysixmonths.Withoutit,Iwouldberelyingtotallyonthedigitalexam,whichprovides verylittleinformation.Ithinkthatuntilanewtestisdevelopedandprovenasareliable indicator;thePSAtestmustcontinuetobesupported. Christopher IwasdiagnosedwithPCattheageof58inMay2008.Thebiopsywasmythird afterarisingPSAandthetwopriorbiopsiescomingbacknegative.Atthetimeof diagnosismyPSAhadrisento7.7.Theresultswereonecorepositivewith5% involvementandaGleason6. SincethediagnosisIhavehadfourmorebiopsies.Twowiththesameresultsand thelasttwowerenegative.MyPSAwentupto11andAvodartlowereditto5.5. IstoppedAvodartafterthelastnegativebiopsyandthePSAwentupto11.4. Inmycase,IhavehadarisingPSAbutnegativebiopsies.Thesixbiopsieshavenot beenpleasantthelastonebeingtheworstwithconsiderablebleedingbutnoinfection. SomyrisingPSAhasresultedin6biopsiesandnoconclusiveevidencethatIneedtohave treatmentforthePC. Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page86 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. Matt I’man11yearprostatecancer(PCa)patientcurrentlydiagnosedasendstage, however,stillgenerallyingenerallygoodhealth.In2000mydiagnosisstartedwith numeroustests,whichincludedseveralPSAtestsbothpreandpostbiopsy.In2001Ihad radicalprostatectomyalongwithaPSAat6weeksand12weekspost‐optodetermineifI hadaresidualPSAandifthesurgerysuccessful. OvertheyearsthePSAtesthasbeenaninvaluabletoolformydoctorsin determiningtheiruseofandtypeoftreatmentsforme.Aftercompletingallthestandard PCatreatments,todayI’mtakingZytigaandhaveaPSAtestevery4‐6weekswhichisused tomeasuretheZytigaeffectivenessandtobesurethatitcontinuestowork. Throughoutmytreatmentandstillatpresent,PSAhasbeenandisanextremely importantdiagnostictoolforthedoctors.Theyuseittohelpdetermineifaspecific treatmentisworkingorfailingandthetiminganduseofmoreexpensivediagnostictests, includingMRIandCTscans. PSAisanextremelyimportanttooltobothPCapatientsanddoctors.Tolimitthe useofPSA,untilwehaveanequalorbetterdiagnostictest,wouldbedetrimentalforall involved. Gary Ihadnosymptomsinthebeginningofthesummerof2011.Ihadnoinsurance,but asaninformedmaleover40,Ipaidthe$100forthePSAtest.Itmayhavesavedmylife,as Ihadstage3prostatecancer.IfoundaprostatecancerforumtolearnasmuchasIcould Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page87 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. asfastasIcouldaboutPCA.Iwasamazedathowmanymembersarebetweentheagesof 40and59.THISISNOTJUSTANOLDMAN’SDISEASEASIHADTHOUGHTBEFORE. Tulia InDecember,2006,atage57,duringaroutineannualphysical,myPSAwas4.2. SincemyPSAthepreviousyearwas1.57,mydoctorsuggestedthatIseeaurologist becauseoftherapidincreaseinthePSAduringtheprevious12months. TheurologistadvisedthatIshouldhaveabiopsyperformed.Theresultscame backwithacancerdiagnosisin6ofthe12samples,withanoverallGleasonscoreof6. Twomonthslater,Ihadaroboticradicalprostatectomytoremovetheprostate, whichdeterminedthatthecancerhadbrokenthroughthecapsuleoftheprostate,buthad notyetenteredthelymphnodes.Luckily,thesurgeonobtainedclearcancer‐freemargins. Thepost‐surgeryGleasonscorewasa7. HaditnotbeenforthePSAtest,thecancer,withinashortperiodoftime,would havefullyspreadtothelymphnodesandoutsidethepelvicarea.Thecancerwasan aggressiveform,andwithoutearlyPSAdetection,Iwouldnotbealivetoday. Theside‐effectsofthissurgeryareminimalcomparedtonotbeingalivetoday. MywifeandchildrenarethankfulforthePSAtestthatsavedmylife! Tom Iamasurvivor.ThePSAtestisbutonesmalltoolintheoverallfightagainstPCa. It’sgrosslyoverusedbyurologistsandoftenasjustificationforimmediateradical treatment. Qualifiedoncologistsshouldbetreatingthisdiseasewiththemanytoolsattheir disposal.ThePSAtestisbutonesmallpartoftheiroverallarsenal.Oncologistsprovidea muchmorebalancedandenlightenedapproachtothetreatmentofPCa. Patricio Everysixmonths,IandmyfamilyexpectthevaluesofmyPSATest,IamaProstate CancerSurvivorandafteralltheprocessofsurgery,recovery,radiationandcollateral effects,Ipraythatthosevaluesremainzero.PSATestbecamethemostimportantand expectedvalueformeandmyfamily,achangeinitsvaluesisachangeinourlives. Jim Ihaveprostatecancer.Mycancerwasfoundattheageof55throughaPSAtest frommyprimarycarePhysician.MycancerisanaggressiveGleasonscore8.Ihavebeen blessedtobetreatedbythewonderfulmedicalstaffatmylocalhospital.Currently,Iamin thelastweekof24weekclinicaltrial. Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page88 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. Ihavehad2injectionsofLupronandinthe12weekoftakingstudydrug abirateron.MyPSA#wasAHIGHOF11...lasttestitwas.3cancerisnegligible.Radical prostatectomyisscheduledforOct20...noradiationnochemoandlimitedsideeffects…I indeedfeelblessed.AftersurgeryIhopetohelpstudentsineducationinsomecapacity afterhavingretired.IthanktheLordthathehasgivenmemoretimeandIamwritingto sharethegoodnessofPSAtestingasimpletestbutadigitalrectalexamdidnotshow evidenceofcancer,Ifelthealthyatthetimebutwithoutthistestingandactingonthe cancer.Iwouldhavebeenfacinganuphillbattletofightmyaggressivecancer.PLEASEall menshouldbetestedbytheageof50.PSAtestinghelpmetodiscovermycancer…Iwill beacancersurvivor. Mike Iam68andenjoyreasonablygoodhealth…theVAperforms/administersmyPSA testannually,andgivenacceptableannualresults,relievesmeofpotentialworryre ProstateandassociatedCancerissues…IhaveaslightlyenlargedProstate,andlikemost menmyageafflictedwiththiscondition,endurethechallengeofvoidingthebladderina timelymanner…butknowingIdoNOThaveCancerrendersthischallengeacceptable,and manageable….IwouldNOTbeawareofmyProstatestatusifnotformyannualPSAtest results…PEACEOFMINDisCOMFORTINGandINVALUABLE… Jason Iwasdiagnosedwithprostatecancerabout15yearsago.MyPSAgotupto13and sureenoughatumorwasdetected!IfnotformyrisingPSAthistumormaynothavebeen discoveredforyears??So,Ihadradiationanditlaydormantforafewyears,thenthePSA startedtoriseagain.Myprostatewasfine.ButthisincreaseinmyPSAindicated somethingwashappening.SoIhadacatscanandcancerormetastaseswerediscovered inmybackinthreeplaces.Now,tellme,withoutthePSAhowwouldthathavebeen Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page89 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. discovered.PossiblywhenIbecamecrippled?So,with15years’experiencewithprostate cancer,PSAcheckingshouldbeamust.Andwhatisthebigdeal?Itonlyinvolvesablood test!! Joseph IhadnosymptomsbutarisingPSAwasdetectedatanannualphysical.Iwassent toaurologistforfollowupandafterayearofwatchingIhadabiopsy(April2008)and theresultswere3outof12coreswerepositiveforcancer.IhadaprostatectomyinJuly 2008thepathologyshowedthecancerhadspreadtoothersectionsoftheprostateitwas evaluatedasT3A.Ifitwasn’tfortheearlydetectionofthePSAtestwherewouldIbe? Anonymous In2005,Iwenttomyprimarydoctor,awonderfuldoctorinBayHarbor,Florida foraPSA.TheresultswereaverylowPSA.Aboutthreemonthslater,bymistake,Dr.D. orderedanotherone,asIwenttohimforgeneralbloodworkbecauseIwasn’tfeeling well.TheresultsofthePSAwereagainlow,but30%higherthanthelasttest.This alarmedmydoctor.HestronglysuggestedthatIgoforabiopsy.Ithoughtthatthiswasa bitextremebecauseIhadnosymptomswhatsoever!Myfriendswhoaremedicaldoctors thoughtthatitwasprobablyunnecessarytogoforabiopsy. Mywife,anRN,insistedIgo.Ihadthebiopsyandmyprostatewascancerous!If notforthePSA,andthefactthatIhadthetestthreemonthslater,Iwouldbeinmajor troubleasIwouldn’thaveseenmydoctorforatleastanotheryearortwo.Iamabeliever inandacancersurvivorbecauseofthePSA. Anonymous Myhusband’sPSAdidnotgoabove3.5,andhehadittestedeveryyear.Thecancer wasfoundbythephysicalexambythedoctorfeelingalumpandthenhavingthebiopsy. Itturnsoutthathiscancerwastheaggressivecancerandwecaughtinjustintimebefore itwentintothemargins.AsIlookbackonmyhusband’slabresultsIcouldseethatisPSA wasrisingveryslowlybutIassumedourfamilydoctorwouldhavecaughtthat,butthen againitneverwentabove3.5andthestandardforflagsgoingupis4.Inhiscasethe doctorwhoperformedthephysicalexamineswastheonewhosavedhislife.Everycaseis different. Myhusband’scasewasnotthenorm.Anytestorteststhatwillsaveaperson’slife shouldnotbequestionedordeniedbecauseofthecostofthetest.Howdoyouputadollar figureonhowmuchalifeisworth? Evenifthecanceristheslowgrowingtypethatwillprobablynotkillyoudoesn’t themanhavetherighttochoosewhathewantstodowithhislife?Ifindthisjustanother costcuttingmeasureandit’sjustdisgusting.Youspendmillionsdevelopingthesetestto Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page90 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. preventmenfromdyingandthenyouturnaroundandsaytheyarenotnecessary.This muststop.DotheyrealizehowmanymenwillnownotonlyhavetheirPSAtestbutwill nothavethephysicalexaminedonebecauseofthissocalledfinding. Anonymous PSAsavedmyhusband’slife.At50hisDr.didarectalbutdidnotbothertodoa PSA.Wewentforlifeinsuranceandat51foundhisPSAtobe15redflagcalledDr.andhe saidwewouldwaitforanothernextPSA23inafewweeks.Ourprimaryandaurologist stillinsistedthatitwasaninfectionsincemyhusbandhadNOothersymptoms. Theywantedhimtowaitforabiopsysincetheyweresobackedupbutthroughmy intuitionasawifewedidone.Gleason9.Whenwegotthebadnewsweweretoldtojust getoutoftheareatotreatitnothowwhywhenwherejustfindsome‐oneelse.Weended upwithsurgeryfollowedthen5yearslaterradiation.Myhusbandfollowsaveryhealthy dietworksouteverydayandisdoingaswellaswecanbedoing.ButPSAchartswherewe areinhiseverydaystruggle.Thisshouldbeapersonalchoice. Stuart AmaterialincreaseinmyPSAindicatedthatabiopsyshouldbeperformed.We wereabletodiagnosethecanceratanearlystage.Attheageof59theroboticmethod wasusedtoremovetheprostate.Ihavehadnoproblem,thankstothatprocedure,with incontinence.Moreover,withcontinuedmonitoringofmyPSA,3yearslaterwehave determinedthat,todate,Iaminremission. Anonymous Ifitistrue,wehavenosubstituteandthisisitotherthandigitalexams,whatinthe hellaretheythinking?Normallysuchmovesarenotmerelypoliticalitisallabout$.So howmanytestsaredoneyearlyandpaidforbypublicentitlementprogramshowmany arepaidforthroughprivateinsurance?Whatistheaveragecost?Iamsuresomebean countersomewhereisengagedinacostbenefitanalysis. SohowmanylivesweresavedorotherwiseimprovedduetothePSAtests.Isay thatifonelifewassparedduetotheearlydetectionprovidedbythistest,theonly scientifictestpresentlyavailable,thenleaveitinplaceuntilwedevelopaviable alternative.Butweneedthetruefactualbasisforthisproposedpolicychange,andan alternative.Toomanyofmenareatrisktothishorribledecease. Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page91 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. Paul DuetoPSAtestingmyprostatecancerwasdetectedearlyatage50(PSA4.4). Iwentthroughbrachytherapyanditisgone.ItakeaPSAtesteverysixmonthstobesure itdoesnotre‐occuranditwouldbeaburdenifmyinsurancedidn’tpayforthePSAtest. Richard IwasdiagnosedwithstageIVprostatecancerandtreatedsuccessfully.Itall startedwitharoutinePSAbloodtestin2005.Mylevelshadelevatedsignificantlysince 2001(mylastprevioustest.)Abiopsyindicatedthatelevenoftwelvecoresampleswere cancerouswithanoverallGleasonof7.Ihadaradicalprostatectomyin2006.PSAlevels wereundetectablepostop(afterasuitablewaitingperiod.)IhadroutinePSAbloodwork every6monthseversincethenand,in2010,thelevelsstartedrisingagain.Following radiationtreatment(IMRT)myPSAlevelsarenowverylowandhaveremainedso. Ihaveseveralsonswhohavebeentestedandwillcontinuetodoso.Ibelievethat detectingviaabloodtestandfollowingatregularintervalswillbetheirfirststepat treatmentshouldanybeneeded. Johnny Iamaprostatecancersurvivorofnineyears.Iampositiveinmyparticularcase thatPSAscreeningsavedmylife.Ihadaveryaggressiveformofcancer,diagnosedin Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page92 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. stage2.TheaggressivenatureofmycancerwasevidentbyaPSAriseof3.0to15.0ina threeyearperiod.AsismostcasesIhadnoideaanythingwaswrong. IfitwerenotforthePSAtestthistumorwouldhavesurelymetastasized.I underwentasuccessfulradicalprostatectomy,andexternalbeamradiation.Icontinueto getPSAtestannuallywhichindicateaPSAof<0forthepastnineyears.. IfwediscontinuePSAtestingmanydeadlytumorslikeminewillgoundetected.I believethattoidentifysuchtumorsareworththeriskofso‐called“needless”biopsies, anxietyandevenovertreatmentresultinginundesirablesideeffectsinsomemen.And pleasekeepinmindthatthesesideeffectsarearesultofthetreatmentNOTthe screening… David Twoyearsagoatage55IhadaroutinePSA.Thelevelwasequivocal;fractionation showedittobemostlyprotein‐boundsoIunderwentabiopsy.Sevenoftwelvecores werepositive,withpositivecoresinallquadrants.Ihadaradicalprostatectomy.The pathologyshowedcanceruptobutnotquitethroughtheprostaticcapsule.Ihadno symptomsatthetimeofsurgery. HadInotbeentesteduntilIhadsymptomstheoddsarethatIwouldhavehad metastaticdiseasewiththepossibilityofwidespreadmetastases,afairchanceofdeath andthelikelihoodthattreatmentwouldhavebeenfarmoreofanordealthanthesurgery provedtobe. Asitstands,Iamcontinent;recoveringsexualfunctionandIhavea22%chanceof recurrenceoverthefifteenyearsaftersurgery,withonly1%oddsofdeathfromit.This meansthatIstandareasonablechanceofsomedayseeinggrandchildrenandwatching themgrowup.IthanktheNPwhoorderediteverytimeIseeher.Noonecantellmethat thatroutinePSAwasnotmoneywellspent. Manny In2004,atage74,myPSAwentfrom4.0to5.1inthespanof4months.Ihadno physicalsymptomsandtheDREwasnegative.ATransrectalultrasoundshowedthatmy prostatewasnotbigenoughtoaccountforthehigherPSAandalsoshowedasuspicious shadow.Abiopsywasdoneandfoundcanceronbothsides,withaGleason9scorewhere theshadowwas. Iwastreatedwithexternalradiation(IMRT)plushormonaltherapy.Sincethen, myPSAhasshownnotendencytorise,stayingwithinthe0.10–0.20range.Also,Ihave noresidualeffectsfromeithertreatmentandIfeelfine.Infact,Iwasingoodenough conditiontofightoffanattackofnon‐Hodgkin’slymphomain2010. Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page93 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. Richard IhadPSAtestingatage62,anditwasonly4.2.ThePSAwentupslowly,anda Prostatebiopsy2yearslaterwasnegativeforcancer.However,sinceIdidhaveanodule intherightsideonthedigitalrectalexam,andmorePSAtestsweregoingupto4.8ng/ml, Ihadarepeatbiopsy3yearslater,atage69.Thiswaspositive,withaGleason3+3=6,4 corespositive,2lessthan5%and2at20%.Then,thePSAwentupto5.2,andthenodule wasslightlylarger(althoughtheprostatesizewasstillonly60CC).So,atage71,Ihad anotherprostatebiopsywhichnowwasGleason4+3=7,with6positivecores,4over20%. Alaparoscopicradicalprostatectomywasperformed.Theexcisedprostateshowed cancerhadextendedthroughthecapsule,butnottothesurgicalmarginsbecausethe surgeonexcisedthenervebundleandmoretissueonthesideofthenodule.MyPSAhas remainedundetectablefortwoyearspostoperativeandIwillNOTdieofprostatecancer. However,ANYsignificantdelayingettingtreatmentwouldhaveresultedin positivesurgicalmarginsandaVERYhighriskofmydyingofmetastaticprostatecancer. Allofmymaleancestorslivedtoage93orolder.Iwouldhavelikelydiedofprostate cancerbeforeage84withoutthePSAtests,prostatebiopsies,andtimelytreatmentcancer thatwasgrowingwasdiagnosed. Michael IhadnothadaPSAtestfortenyears.Ontheinsistenceofmydoctor,Ihadone threeyearsago,anditwas7.9.AbiopsyfoundStageIIIcancer.Ihavehadaprostectomy, hormonetherapy,andradiationtherapy.MyPSAreadingsarenow0,butIwillbehaving biyearlytestingforawhiletoseeifthecancerhasbeenstopped.IowemylifetoPSA testingandmydoctor.IdonotunderstandthereasonormotivesagainstPSAtesting, unlessitisamovebytheinsurancecompaniestosavemoney.IfPSAtestingisdropped, manymenwilldiethatcouldhavelived. Paul Iwas49justbeforemy50thbirthdaywhenmydoctorincludedaPSAtestwithmy cholesteroltest.Itcamebackelevatedhesentmetoanurologistwhodidabiopsythat camebackpositiveforcancer.AftertalkingwiththedoctorandmuchsoulsearchingI decidedtohavetheprostateremoved.Surgerywentwellandthepathologyreportcame backthatcancerwascontainedintheprostate.AyearlaterIhavenoEDorincontinence problems.TheroutinePSAtestsavedmylifeandthesurgerydidnotruinmylifeeither. Sheldon ThePSAsavedmylife.IhadanannualPSAtestsincefifty.Iwasdiagnosedwith prostatecancerin2003,atage56,fromabiopsyofmyprostateglandthatwas Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page94 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. precipitatedbyayearoveryearrapidriseinmyPSAlevel.Ihada4+3Gleasonscorethat indicatedthatIhadanaggressiveformofprostatecancer.Fortunatelybecauseofthe earlydetectionandagreatsurgeontheprostatectomyremovedtheentirecancerous growth. NoweightyearslaterIhavehadnorecurrenceofthecancerandhavehadnoneof thesideeffectsassociatedwithaprostatectomy.Ihaveregainedallfunctioningandam leadingafullandactivelife. Ron IhadayearlyPSAtestdonefrom2001(whenIturned60).Itroseslowlyeachyear untilbyMay2007whenitwas4.1.ByNovember2007itwas6.8atwhichpointabiopsy wasdone.Theresultscamebacknegative.Itheldat6.8untilSeptember2008atwhich pointitbegantoriserapidlyandbyJanuary2009itwas12.Anotherbiopsyfoundcancer cellsGleasonscore3+3andtheadvicewas“waitandwatch.”Ihadhadsomuchpainand discomfortIsoughtasecondopinionandhadtheprostateremovedinMay2009bythe robottechnique.OnadmissiontothehospitalthePSAhadrisento30. Postoppathologydisclosedthatthecancerhadburstthecapsuleandwasahighly aggressivecancerwithaGleasonscoreof4+5.Abonescanrevealedthatthecancerhad metastasizedtotheleftiliaccrest.Responsetoandrogendeprivationtherapywasswift andsuccessful. Oneinjectionevery3monthsforayearandthePSAwasbelow0.Itremained therefor7monthswithnotreatmentandthenPSAbegantoclimbagain.InMarch2011I had13radiationtreatmentsontheonelesionontheiliaccrest.Thehopewasthat radiationwouldkillthecellsthereandthatperhapstheprogressofthediseasewouldbe haltedforsometime. Thatisnottobethecase.AlthoughthePSAdroppedafterradiation,during July/August2011itbegantoclimbevenmorerapidlythanbefore.Abonescandone3 weeksagoshowsthattherearenowlesionsinmyhipjoints,ilio‐sacraljoint,atlumbar 3,4,5,atthorasicT6andonseveralribs.Androgendeprivationtherapyhasbegunagain andIamnowwaitingtoseeifitwillbeaseffectivethistimearoundaslast. Inmycaseithasn’tbeenaquestionofhavingaPSAtestdoneornot.Whatisclear isthattheinterpretationofthetestiscrucial.Forfartoolongthehospitalmonitoringme dismissedmyfearsaboutthehighPSAcountwhenitwas6.8sayingitwasprostatitis. Whatisequallyobviousisthattheymissedthecanceratfirstbiopsy.Thecancer sourcewasontopofthegland,underthebladder–aplacewheretheynormallydon’t takeanysamples–oratleastthehospitalmonitoringmedidn’ttakethemfromthere. FromwhatIreadthereisalsoalotofscaremongeringgoingonwithtalkof incontinenceandimpotencepostoperation.Thatneednotbethecaseatall.Andevenifit is,I’dratherbealiveandimpotentthandead.Butimpotenceandincontinencewasn’tthe caseformepostop.Thesurgeonsparedthenervebundlesononesidewhichallowedme tohaveafullerectionpostopbutofcourseandrogendeprivationtherapyknocksthe Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page95 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. libidoout.Becausethesurgeonmadesurethattherewasalongenoughconnection betweenbladderandpenisaftertheprostatewasremoved,Ihadnocontinenceproblems fromday1afterthecatheterwasremovedandthathasbeenthecaseeversince. Myadvicetoallmenover40istohaveayearlytest.IfthePSAgoesover4then someformofextrascreeningshouldbedone.IfthePSAsuddenlyincreasesanddoubles withinashorttimethenthereisrealcauseforconcern.TheamountoffreePSAshouldbe comparedwiththePSAitself(whichwasnotdoneinmycasedespitemyaskingthatitbe done.TheanswerIgotwas“wedon’tdothathere.”Ishouldhavegoneelsewhereright then.)Comparisonofthosetwopiecesofdatacangiveabetterindicationastowhether thereiscancerpresentornot. SoenoughoftheemotionalandhystericalhypeoverPSAtesting.Getitdone.Insist thatitbeavailableandthathealthinsurancecompaniespayforit.Acceptnothingless. Alvin Iwasdiagnosed(withPSAtesting)andtreatedatmilitarymedicalfacilities,and haveremainedinremissionforover10years.NOTtestingmenforPSAatafairlyearly ageshouldbeclassedascriminalnegligence,andinsurancecompaniesnotsupporting paymentfortheprocedureshouldbefinedinthemillions(negligenthomicide)forEACH lifelost.Testing(automaticallywheneverbloodisdrawnfromaman)beginningatage40 seemsmostreasonable.Asa“doublesurvivor”(lungcancerinremissionfor3years)I wouldbeirresponsibleifIdidn’tpassmystrongbeliefintestingalongtootherpotential victims. Jim IaskedmyphysiciantogivemeaPSAtestwhenIwas48yearsold.Ihadnofamily historyofprostatecancer,butIhadreadthatsomeresearchersthoughtthatestablishing abaselinenumberandplottingPSAvelocitywasawaytodeterminethepossibilityof cancer.MyfirstPSAwas3.7,consideredwithinnormalranges.15monthslaterduringmy annualphysical,IlearnedthatmyPSAhadspikedto7.3.Afterrulingoutbenigncauses (prostatitisandenlargedprostate)myurologistconductedabiopsywhereitwas determinedthatIhadprostatecancerwithanaggressivelyratedtumor. Threeyearsaftersurgery,thereisnoevidenceofrecurrence.Mysurgeon remarkedthatitwasfortuitousthatIhadpushedfortheearlyPSAtestandthatI probablyalreadyhadcancerthen.IamconvincedthatthePSAtestsavedmylife.Ican understandthatPSAtestingmightbeworrisomeforoldermenwhomightultimatelydie fromanothercause.Itmakesnosensetomeforinsurancecompaniestostopcovering PSAtests.Intheabsenceofabettertest,resortingbacktodigitalrectalexamsor advancedsystemslessonsthelikelihoodofagoodoutcomeformenwithprostatecancer. Inmyopinionsuchamovewouldbereprehensible. Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page96 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. Anonymous PSA7yearsagowas3.5upfrom1.5previousyear.Biopsyshowedcancerwitha Gleasonof43(7)hadsurgeryandpathologyresultswerealso(7)but34 Ignoringanytreatmentorfailuretodiscoverwouldhavelikelyresultedinmydeatha coupleofyearsago.Iamcurrently0.2after5yearsofbeing0.0soIlikelywillbedealing withthisagainbutIhavenoregretsandbelieveIhaveconsiderablyprolongedmylife. Anonymous WithoutPSAtestingovertime,Iwouldneverhavecaughtmyworseningprostate cancersituation.Irealizethatitalsocanleadtofalsefindings,butonbalance,ifitkeeps peoplelikemealive,doesitmakesensetodoawaywithit? Evenmorerelevant,PSAtestingforthoseofuswhodohaveprostatecancer, especiallyinadvanced(systemic)stages,itistheONLYwaywecanmonitorwhatis happeningand,withappropriateintervention,keepthecancerfromreachingtumor stage. Anonymous IwasdiagnosedwithprostatecancerviaaPSAtestaspartofaroutinemedical. ThePSAwasonlyslightlyelevated,(3.7)butmythoroughdoctorscheduledan investigationwhicheventuallyfoundatinyamountofcancerinmyprostate.Itwasearly enoughthatIcouldhavesurgery,whichwassuccessful.That$30testsavedmylife. Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page97 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. Austin WithoutPSAtestingmyprostatecancermayhavegoneundetected.Butwith frequenttestingtomonitormycondition,biopsieswereorderedwhichledtothe detectionofprostatecancer.ThiswasdonewhenIwas62yrs.old.Nowalmost7years later(approaching69yearsold)Iamcancerfreethankstoearlydetection. Robert IhaveprostatecancerforeighteenyearsandItakeaprostatetesteveryyearto seethatmycancerstayat0.4,Ifmyprostatecancergoover4.0Iamintroublethatthe cancerwillgotomybones,IfthathappenIwillbeinallkindofpainordeath.PSAtestis veryimportanttoallProstateCancerPatients.IamasurvivorforEighteenyearsbecause ofPSA. Arek IbelievePSAtestingsavedmylife.Iwas41whenIaskedforaPSATestbasedona “hunch”(hadnosymptomsatall).Itcamepositive,thecancerwasveryaggressive.Ihada radicalprostatectomy&amdoingfinenow,nearly5yearspostop. IwastoldifIdidn’tdiscovermycancerwhenIdidIwouldprobablynotmakeitpastmy 45thbirthday. HereinAustraliathedeathratefromprostatecancerhasdroppedwhenthePSATesting expanded. Jim Itcertainlysavedmylife.ThreeyearsagoadigitalrectumexamandnoPSAand thedoctorsaidallwaswell.Flashforwardlessthanoneyearatanotherdoctorwhodida PSAtestandfoundthatIhadanelevatedPSA(around10.00).Furthertestingrevealed thatIhadprostatecancerandIalsohadextracapsularinvasionmeaningithadspread. WithoutthePSAtestingandthensubsequenttreatmentIwouldbeinverysevere difficultiestoday.Thediscoverywasjustabouttwoyearsago. Iwasahealthymale,non‐smoker,non‐drinkerandwasexercisingandswimming atleastfourdaysaweek. IrefusetobelievethatPSAtestingisoflittleornovalue.PerhapsIamananomaly butIdon’tthinkso. Icreditthescreeningwithsavingmylife. Jim Iam62andinoverallgreathealth[exceptforrecentlydiagnosedPC].Iworkoutat agym5timesaweek,feelgreat,andhavenofamilyhistoryofProstateCancer.Mydoctor Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page98 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. recommendedayearlyPSAtestandmyscorehasbeenslowlyrisingatabout0.25per yearforthepasttenyears.Ihitthemagical4.0ayearagoandwastoldtoseeaurologist. AfterfurtherbloodworkIhadabiopsy,revealingearlystagecancer.Iamvery gratefulforcatchingthisearlysoastohaveoptionsandamnowbeingmonitoredon activesurveillance.Iwouldnothavebeenabletodetectthiscanceratanearlystagesoas tohaveoptionsifIhadwaiteduntilsymptomsappeared.Torecommendthatmennotget PSAtestsseemstometobeirresponsible.Yesthereareotherthingsthatcantriggera highPSA,butthatiswhereagooddoctorhelpsdeterminewhatiselevatingthePSA. Harold PSAtestingwasveryimportanttome.Itsavedmylife.AfteraPSAreadingthat indicatedImayhaveprostatecancerIhadabiopsythatindicatedaggressivecancer.Ihad aradicalprostatectomyandradiationandstillmyPSAwasrising.IamnowonADT (hormonetherapy).MyPSAisnowundetectable.ThePSAisnowtheonlytestthatwill indicatemyprostatecancerremainsdormant. Anonymous In2002myGPdoctornoticedthatmyPSAwaselevatedsignificantlyfromthe previousseveralannualexams.SixmonthslatermyPSAwaselevatedevenmore,somy doctorsentmetoaurologist.Afteranother3months,myPSAwaselevatedmoreyet.A biopsyconfirmedthatIhadcancerinmyprostate.Ihadneverhadanysymptomsor problems(enlargement,troubleurinating,pain,etc.)Infact,duringmyregularphysical withaDRA,mydoctorstatedthatmyprostatewas“niceandsmall.” Neitherofussuspectedcancer!OnlytherateofriseofmyPSAvaluesalertedmy doctorsthattheremightbecancer.WithouttheannualPSAtestsfromthemid‐1990s through2002,mycancerwouldhavegoneunnoticeduntilwhoknowswhen,butmost Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page99 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. probablytoolateforsuccessfultreatment.Arecurrencealsowascorrectlydiagnosedbya rapidly‐risingPSAin2009. Bob PSAfollow‐upafterradiationisabsolutelynecessarytodetermineprogress.Ask yourradiologist! Daniel Iwasdiagnosedwithprostatecancerat54solelybecauseofthereadyavailability ofthetest.Ichosetohavesurgeryandsubsequentlydiscoveredthatthecellsthatwere removedwereofatypelikelytobemobileandcauseadvancedmetastaticdisease.Now2 yearspost‐surgeryandcancerfree. IagreethePSAisfarfromaperfecttest,buthaditnotbeenreadilyavailabletome itislikelymyqualityoflifeandpossiblymylifespanwouldbeconsiderablyimpaired. EliminationofPSAscreeningisthewronganswer,particularlyforyoungermenwho apparentlyhaveasomewhathigherriskofhavingaggressivetumors.Weneedto certainlyfindbettertestsbutdon’tmaketheonlyscreeningtoolwehaveunavailable becauseofactuarialmath.Suretherearerisks,butsomelevelofinformeddecisionis betterthansurpriseyouhavemetastaticdisease. Mel Iwastestedinthe1980’sandearly1990’s.In1994myPSAwentuptoover5.I wasadvisedtoseeaurologist.IhadabiopsywhichshowedPCa.Ihadaradicalretro pubicprostatectomy.SureIhavehadsomeproblemswithafteraffects.ButIandmy doctorsbelieveIamcancerfree.Ihavemarriedoffadaughter,haveseen2grandchildren beenborn,survivedbeingattheWTCon9/11,retiredfrommyformaloccupation,have beenvolunteeringformanyorganizations,ambeginninganewcareer,mademanynew friends,andenjoyinglife. Margo Myhusbandwasdiagnosedwithprostatecancerthreeyearsago.Hehadno symptoms.HewentinforaphysicalandtheydidaPSAtestonhim.Thatwastheonly symptomhehad‐highPSAnumbers.Hehadabiopsyanditindicatedatumor.Itwasonly aftersurgery,thatwelearnedtherewasanotherspotbyhisbladderthatdidn’tshowup inthebiopsy. Wefeelveryfortunatethatthiswasdiscoveredintime.WithoutaPSAtest,his cancerwouldnothavebeendetecteduntilitwastoolate.Heisdoingwellnowandgoes inevery6monthsforanotherPSAtest. Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page100 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. Dennis IwasgivenmyfirstPSAtest6yearsagoattheageof55.Thetestshowedthatmy PSAwas8.4.ShortlyafterthisPSAtestabiopsyofdonewhichshowedthatIclearlyhad prostatecancerandthedoctorsIvisitedrecommendedbecauseofmyagethatIshould considertreatmentforthiscancer.Ididquiteabitofresearchandvisitedmanydoctorsto learnallthatIcouldabouttreatmentoptionsandthendeterminedthatIwouldhavethe RoboticRadicalProstatectomysurgery.ThiswasdoneinMayofthatyear2005.Sixweeks laterIwasbacktowork. ItturnedoutthatmyGleasonscorewas7wherethebiopsyhadshownittobe6. Forsixyearsnow,Ihavelivedaverynormallifewithveryminimalsideeffectsthatcome withthistypeoftreatment. Nowaftersixyears,myPSAhasstartedtoriseagain,soIhavestartedtreatmentto completelykilltheProstatecancerthathasreappeared.Iampositivethatthistreatment willworkandthatanysideeffectswillbeminimal.IamsopositivethatIhaveagreedto participateinaClinicalTrialsothatinthefutureothermencanbenefitfromwhatis learnedfromthisstudy. Myonlyregretis,ifIhadknownsoonerthatthePSAtestwasavailable,Iwould haverequestedtothedoctorthatthetestbedoneatayoungerage.Detectingthecancer soonerwouldhaveprobablymadeitpossibletoeliminatethecancerbeforeithadtimeto spread. Dennis Myfatherandhisfatherhadprostatecancerandbothdiedofthedisease.Bythe timethediseasewasidentified(noPSAtestsatthattime)itwasmostlyunmanageable andhadmetastasized. FortunatelyformethePSAtestwasavailableandovertimeIwatchmyPSA increasetothepointthattreatmentwasindicated.PSAiscriticallyimportantifused correctly.Imeanasingletestdoesn’tsaymuch.Ittakesseveralteststodeterminevelocity ofthecancerandonlyPSAhastheabilitytomakethosefactsavailable. Chet PSAtestingfirstalertedmydoctorandmetothepossibilityImighthaveprostate cancer.AftersubsequenttestsprovedIdidhavethecancer,Iunderwentprotonbeam radiationtherapyandnowusePSAtestingtomonitorthedestructionofthecancercells andthepossibilitythattheymightrecuratsometimeinthefuture. WouldIbebetteroffifIhadneverhadanyPSAtesting?Idon’tknow.Ihadno symptomswhichwouldhavedirectedmetoseeaurologist.Afterprotonbeamtherapy,I havenosideeffectstospeakof,andmyPSAlevelissubstantiallyreduced.Thetreatment Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page101 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. waspainlessandnottooinconvenient,butmaybeIwouldhavelivedjustasnormalalife ifIhadneverbeendiagnosedwiththisslow‐developingdiseaseinthefirstplace. Anonymous WithoutPSAtesting,Iwouldn’thaveknownIhadprostatecancerprobablyfor years.ArmedwiththeknowledgethatmyPSAwashigh,Ihadabiopsyandradical prostatectomy.PSAtestinglaterrevealedthatthecancerwasstillthereandfiveyears later,itindicatedmetastasis.InowneedPSAtestingtoindicatehowwellandrogen deprivationtherapyisworking.PSAtestinghasservedmewell. Diane MyhusbandisalivebecauseofaPSAtestat49,andthat’sonlyafterotherdoctors failedtodooneearlierwhentheyshouldhave.Finallyfoundagooddoctor.StageIVbut nowfiveyearsundetectableaftersurgeryandchemo.What,shouldhehavewaiteduntilit hadspreadtohisbonestosparehimthesideeffectsofsurgery?He’salivetodaybecause ofsurgeryandtreatment.Heparticipatedinatrialwheretheygivechemorightafter surgery. James Atage40(in1988)Ihadmyfirstprostatebiopsy.Therewasnocancer.Thefirst PSAIhaverecorded,though,wasin1994.By2001myPSAhadrisento4.2.By2008it was7.8.SinceIhadbeentakingAvodartformanyyearsIunderstandthatthisscoremust bedoubled.AlongthewayIhadatleast6biopsies.Nonerevealedcancer,althoughsome ofthemshowedhighPIN,untilthebiopsyinearly2009.Ihadlotsofprostatecancerin Prostatesection1andsomeinProstatesection2.MyGleasonscorewas3+3. TheurologistorderedbonescansandMRI’s,andneitherrevealedanycancer outsidetheprostate.Ihadasecondopinion,andstilltherewasnocanceroutsidethe prostate.Ihadmysurgery(laparoscopic)inApril,2009.Thesurgeonfeltasmyurologist didthattheoperationwasasuccessandthecancerwascontained.However,whenthe biopsycameback,thecancerwasinthemarginsbutnotintheseminalvesiclesandthe lymphnodes,etc.ByDecemberof2009myPSAhadquadrupled,andradiationwas recommended.IfinishedmyradiationinJune,2010.Inthepasttwoorthreemonthsmy PSAhasrisen,andthedoctorsarejustwatchingeverythreeorfourmonthswithPSA’sto seewhatisgoingtohappen. AsonecanseefrommytestimonialthePSAhasbeenimportantalltheway throughandwillcontinuetobeinmonitoringmyprogressorlackofit.Yes,Iwishthere wasabettertestthatcouldidentifythoseofuswhohaveaggressivecancerandthoseof uswhodon’t,butwearenotthereyet.Ialsowishthatbettertechniquescouldbe Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page102 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. developedtotakecareoftheimpotencethatIhaveandwillcontinuetohaveaccordingto whatIhavereadofthosewhohavehadaprostatectomyandradiation. IalsowishthatIhadtotalcontinence,althoughIamblessedthatIhaveonlyslight problems.Menneedtoriseupandmakecertainthatthesethingscometopass.Inever dreamedthatmysexlifewouldchangesodrasticallybymytreatments.However,thePSA mustbeavailableforallmenbeginningatleast40untilsomethingbettercomesalong. EvenwiththePSAmyprostatecancerprogressedtoofarbeforeIhadsurgeryeven thoughIknowIhadagreaturologistwhowaswatchingoutforme. Bruce PSAtestingledtobiopsy,biopsyledtosurgery,andonlyatsurgerycoulditbe determinedthatmyprostatecancerhadalreadymetastasizedtothebladder.No symptomsexceptrapidriseinPSA.Howadvancedandwide‐spreadwouldmycancer havebeentoresultinsymptomsthatindicatedprostatecancer?It’strue,deadmendon’t needPSAtests. Nancy ThemanIlovehasstage4prostatecancer;thisishowtheyfounditalthoughit wasalreadyintheadvancedstagesbythetimesymptomswereoccurring.Icannot imaginenothavingPSAtestsavailableformen,anymorethanIcanwomannothaving mammograms. Jamie InJuly2010abloodtestrevealedanelevatedPSAcountandIwasreferredtoan Urologist.AbiopsyoftheprostatewastakenandforwardedtoJohnHopkinsanalysis.The biopsyrevealedaGleasonscoreof9,requiringthatfurthertestingbedonetoinsurethat thecancerhadnotspreadtootherpartsofthebody. Thecancerwasisolatedtotheprostate,andvarioustreatmentoptionswere offered.IoptedforRadiationtreatments(44sessions);andaseriesof6Hormone injections.AyearhaspassedsincemylastRadiationtreatment,andallsubsequentPSA testscoreshavezeroorless.MyfamilyandIfeelthatthePSAtestwasalifesaverandI’m forevergratefulofitsavailability. Kenneth MyPSAtestdiscoveredcancerafterabout15yearsoftesting.Myfatherand brotherhaveallhadprostatecancer. Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page103 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. Ed PSAsavedmylife;savedmefromalingeringpainfuldeathduetoprostatecancer.I aminahighriskgroup–mypaternalgrandfather,father,uncleandoneofmybrothers haveallhadprostatecancer.Myfather,brotherandIwerecaughtintime.Mygrandfather diedbeforeIwasborn,myunclecommittedsuicidewhenthepainofstageIVandthe futilityofthestrugglebecametoogreat. Myfatherhadaprostatectomyatage64.AsadirectresultofthatIbegangetting annualPSAtestsinmymid‐thirtiesandreceivedatimelywarningwhenmyreading jumpedatage50.AbiopsyrevealedGleason7cancerintheleftlobe,adigitalexamwas inconclusive.Itoldthephysiciantotakeoutasmuchrealestateashefeltnecessary;I enjoyanactivelifewithmanyinterestsand Hadnointerestincheckingoutinmyearly50's.Impotencewasahighpricetopay, butthesurgerywassuccessfulandIamstillenjoyingmylife.Accordingtothesurgeon, thecancerwasamillimeterawayfromexitingtheprostate,haditnotbeenimpliedby PSAandconfirmedbybiopsy,butinsteaddiscoveredlaterbydigitalexam,Iwouldbe writingamuchdifferentnotetoday….ifIwasaliveatall. IsupportPSAasascreeningtoolatleastforthoseofusathighrisk. Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page104 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. Jay Attheageof53,IhadnoindicationthatImightbehavinganissuewithmy prostate,butwhileundergoinganannualphysicalformypilot’slicense;mydoctordida PSAtest.Hesavedmylife.ThatPSAsetinmotionaprostatebiopsyandsubsequent prostatectomythatresultedintheremovalofaveryaggressiveandfastmovingformof prostatecancer. HadwenotfoundthecancerthroughthatroutinePSAtest,thecancerwouldhave metastasizedandIwouldbefacingamuchshortenedlifespan.Iowemylifetomy doctor’sdecisiontodothisroutinetestatthetimetheydidit.Underthesenewguidelines Iwouldbeastatistic,notasurvivor.Ican’thelpbelievethatonceagainmoneyand afewgreedyinsurancecompaniesarewillingtoallowchildrentoberaisedwithout fatherssotheycansavemoneyinsteadofencouragingmoreofthesetypesoftests. Robert In1998IhadaPSAtestdonethatreflectedareadingofborderlinehigh.However, thedoctoradvisedthateverythingwasnormal.AyearlatermyPSAwasquitehighand testsshowedthatIhadstageIVprostatecancer.I’mcertainthatayearearlierhadthe doctorrecommendedfurthertesting,suchasabiopsy,mycancerwouldhavebeencaught earlyenoughtobetreatable. Fortunately,Ihavesurvivedfor12yearssofar,nothankstotheoriginaldoctor’s everythingisnormal”.Imaybeanexceptiontothe“norm”asIhavebeentold,butyou can’tbetooaggressiveindealingwithcancer. Anonymous Iamanineyearsurvivorofprostatecancersurgerybycryo‐ablation.IbeganPSA testsin1998(atage60)onanannualbasis.In2002followingaslowbutsteadyrisein thePSAnumbers(3.4to5.8)IunderwentaDREandsubsequentlyabiopsy,witha positivediagnosis.Ifoundcryo‐ablationtobeminimallyinvasive.Icontinuetogetan annualphysicalexaminationandinsistonaPSAtesteachtime. Thereadingshavesofarbeenminiscule(0.023etc.).Icontinueatage73toenjoy relativelygoodhealth,andcreditearlydetectionviaPSAtestingtomystillbeinghere.I havesincelostthreeclosefriendswhoseprostatecancersweredetectedtoolateforthem todomuchaboutit.Iremainaferventadvocateofthetest,butwouldbedelightedifa betteroneweredevised. Anonymous Hello.IamfromIndia.Myfatherhasbeenoperatedforprostatecancerandthe treatmentiscalledhormonalsomething.HehasbeenfollowingPSAtestsincemanyyears. Becauseofthistestonlythepresenceofcancerwassuspected.Thereafterothertests Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page105 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. confirmedit.Afteroperationevery3or6monthsPSAtestisdone.TillnowthePSAtest showsbelowborderlevel.Heisnothavingmuchinconvenience.Thedoctoralsoinformed usthathehasseenpatientshavingPSAashighas5000SURVIVING! SothepointisHighPSAneednotbeafactortoworry. Anonymous IbelievethatwithoutthePSAtest,Iwouldbedeadbynow.Afterradiation treatmentdidnotcureme;Ihadcryosurgeryandbiochemicalfailure.Iamdoingactive surveillanceuntilIneedhormonedeprivation.WithoutthePSAtestyouareplaying Russianroulettewithyourlife. Tim Atage42,onaHalloweennightIreceivedacallfrommydoctorthatnooneever wantstoreceive…youhaveCancer. Iwasdevastatedandjustbrokedownandcried.Howwasitpossible?Ihadno symptoms–alldigitalexamswerenegative.Nosignsofanykind. IfeelthattheONLYthingthatsavedmylifewasaPSAtestwhichmydoctorjusthappened togivemeuponafluke,asPSAtestsarenotnormallygivenuntilage50. Withalevelof4.9itwashighlyelevatedforsomeoneofmyage.Biopsiesdefinitely showedcancer,andafterradicalprostatectomysurgerytheyfoundIhadavery aggressiveProstatecancer,withaclinicalscoreofT2C&Gleasonscoreof7. Ifmydoctorhadn’ttakenthePSAtestwhenhedid,IhonestlyfeelIwouldnotbe aroundtodayhadtheynotgivenmethatPSAtestandwaiteduntilthestandardageof50. APSAsavedmylife. Anonymous InMarchof2008at51yearsoldIwentinformyyearlyexam.IhadaDREanda PSAtestdone.TheDREwasnegativebutadaylaterIreceivedacallfrommyDr.andwas toldthatmyPSAwas6.5.AbiopsywasdoneandinMayIreceivedmyresults.Gleason Score3+4=7,T1c.IhadsurgeryinAug2008andnow3yearslatercancerfree. Myfatherhadprostatecancerbutitwasasurpriseandshockingformetohaveit atmyage.Thingsaregoingbetternowbutthefirstyearwasadifficulttime. Bettertofindoutearlierthanlater. Stephen Ithankmyprimaryphysicianforalwaysaskingatmyannualphysicalfromaround age40ifIdesiredaPSAtestincluded.Heabsolutelygavemethechoice,whichIaccepted. Overtheperiod2005‐2007heobservedan“acceleration”inPSAvaluesfrom2.2‐5.9‐7.9, Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page106 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. atwhichpointIwasreferredtoaurologist,followedbythedreaded(anddreadful) biopsy,andmanyothertests.Iwashealthy,58yearsold,andgivenwhatIfoundoutfrom theradiologyreports(andseveralopinions)“watchfulwaiting”wasnotawisechoice.I wouldnotlikelybeoneofthosewho,untreated,would“diewith”ratherthan“dieof” prostatecancer. IthankPSAtestingforgivingmethefouryearsandcountingthatmyfamilyandI haveenjoyed. Larry PSAtestingworkedforme:WhenIwas60,IhadmyannualPSAtest.Althoughthe PSAwaslow,ithadrisenveryquicklyinthepastyear.Afollow‐uptestshoweda suspiciouslyhighpercentageoffreePSA.AcarefulDREdetectedahardarea.Abiopsy foundcancerinthreeadjacentcoreswithtwoofthecorescontainingover70%. TheGleasonscorewas7.Imagingshowedatumorthatwas“unexpectedlylarge” withcapsularinvolvement.Onetest,notknownforitsspecificity,suggestedextra capsularextension,seminalvesicleinvolvementandapositivenode.Iwastreatedwith radiationandayearofandrogendeprivation.Ithasbeenfouryearssincealltreatment ended.MyPSAisundetectableandtherearenosignsofrecurrence. Ipaidaprice:Treatmentcausedurinaryurgencyandfrequencywhichresponded welltoFlomax.Ialsohadmildbutfrighteningrectalbleedingwhichwasstoppedwith radiofrequencyablation.And,finally,IhaveEDforwhichIuseLevitra. I’llneverknowifIwasover‐diagnosedorreceivedthebesttreatment.Whodoes? ButIdoknowthatIchosemytreatmentthoughtfullywiththehelpofamedicaloncologist whohadnovestedinterestinanymodality.Itwasareasoneddecision. Myconclusionsarethese:PSAcanbeagoodscreeningtestifPSA velocity/doublingtimearecalculated,freePSAismeasuredwhenappropriate,and follow‐uptestsandtreatmentsarechosenrationally,withacarefulweighingofrisksand benefits.PSAtesting,likeanytool,isnobetterthanthepersonwieldingit.Clinicianswho relyononeisolatedPSAvalue,outofhistoricalcontextandwithoutfollow‐up,giveita badname.Thoughtless,cursoryuseofsuchtoolsisaproblem Rusheddecisionstotreat(ornottreat)withoutcarefulstaging,grading,risk‐ benefitanalysisandadisinterestedsecondopinionarealsoproblematic.Butthese problemsareendemictoAmericanhealthcare.Perhapsweshouldaddresstheminstead ofblamingourtools. Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page107 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. Bill In2005abiopsydeterminedIhadprostatecancer.Withinayear20friends,near andfarwerealsodiagnosed.Sixarenowdead.TheyallhaddelayedhavingPSAblood work.Theother14,Iincluded,hadregularPSAtesting.Eachofushadtreatment.Mostof us(thosewhodiedaswell)hadorhavesideeffectswithvaryingdegreesof unpleasantness.But,witheachPSAtestingsincetreatment,wewhoarealive,fearthe cancerwithinlessandcandevoteourenergytodealingwiththeotherpartofhaving prostatecancer:incontinence,impotence,radiationsicknessoreventhemoremundane unstoppableflatulence. TakeawayourPSAtestingandwewon’tknowifthecancerwithinistameor triumphant.Keepitfrommenyetuntestedandtheywon’tknoweither.Mysixdead friendswouldlikelyhavechosenthepossibilityofsideeffectsfromtreatmenttodeathif theyhavebeenabletomakethatdecisionintime. John PSAtestingsavedmylife.Ihadskippedannualphysicalsforafewyears,whenin 2004mywifeinsistedIgetone.Iwasage52.ThatroutinephysicalincludedaPSAtest. MyPSAwas114(notatypo).Ihadnosymptomsofdisease.Follow‐upswithaurologist (ultrasoundandbiopsy)confirmedcancer. Iamnowa7‐yearsurvivor,havinghadmyprostateremovedon12/1/04.PSA testssincethenconfirmaPSAof0(notmeasurable). Iwaslucky,andoweitalltoaroutinePSAtestincludedinaroutinephysical. Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page108 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. Ray IknowthatcurrentlythePSAtestistheonlytoolwemenhavetodetectapossible problemintheProstate.Ifitwasn’tforthePSAtest,Iwouldnothavehadnoticedthere maybeaprostateproblem.ThebiopsyconfirmedthatIhadprostatecancer.THEREISNO OTHERWAYTODETECTAPROSTATEPROBLEM!!!! Iamaprostatecancersupportgroupleaderandseethedifferenceofsurvivalin menwhohavedetectedProstatecancerearly,thruPSAtesting,andmenwhohavenot hadaPSAuntiltheProstatecancerwasadvanced. Carol Duringthe90smyPCProutinelytookmyPSAduringmyannualphysical,andmy PSAusuallywasborderlinehigh.Butin1997,itjumpedtoabout7whichtriggered furthertestsandabiopsy.Thebiopsyindicatedprostatecancer.Ihadradical prostatectomy.Afterrecovery,myPSAwasroutinelycheckedanditremainedbelow0.1 forabout10years,butthenitspikedtoabout20.Afteraretest,toseeiftherewasalab error,myPSAwasuptoabout22.Afterseveraltests,itwasdeterminedthattheprostate cancerhadreturned.Iwasputonhormonetherapy(HT),andamonthlyZometainfusion. Carl Mygrandfatherdiedtwoyearsafteranorchiectomyduetoprostatecancer. MyfirstPSAtestescalatedtobiopsyandroboticradicalprostatectomy. Iamverylucky.Mygaypartnerof14yearsremainsatmyside. Iremainfunctionalsexuallyandlackincontinence. IconsiderPSAtestingassavingmylife.Itrunsinthefamily. Ilosthalfofnerve,sparingfunctionbutthecancerwascaughtbeforeitthreatenedmylife. Aggressivecancerisdeadly.Onlytakes2years. Whyshouldn’tmysongetaPSA?HedidandtheDoctorsaidcomebackin5years. Testingsaveslives.Itsavedmine. William IamatestimonialtotheeffectivenessofPSAtesting.IwatchedmyPSAlevel graduallyriseoveranumberofyears.Whenittookasuddenlargerise,myDoctor performedabiopsywhichindicatedatypeofcancer.Ihadradioactiveseedimplants whichkilledthecancerandleftnosideeffects.Iconsidermyselfveryfortunatetohave earlyrecognitionofcancerandtheensuinggoodresults. Mynextdoorneighbordidnothaveprostatecancerdetectedearlyenoughand subsequentlydiedofit. Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page109 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. Howard MyPSAwas6.6inSept.2008.IaskedmyV.A.doctorforlastyear’sresult.Hehad togobackto2andahalfyearstomarch2006tofindthelasttestwhichwas3.3.Mypost oppathologyrevealedGleasonninewithseminalvesicleinvasion.Ihadtohaveradiation andHormonedeprivation.IftheyhadbeencheckingmyPSAonaregularbasisIcould havebeendiagnosedintimetohaveasurgicalcure.IamafirmbelieverinPSAtesting andbelieveitshouldbeencouragedinTVadslikebreastcancerawarenessisforwomen. Joe APSAtestgotmestartedontheroadtotreatment.WithoutitIwouldnothave knownthatIhadthedisease. David Aswithallcancersthekeytotreatmentisearlydetection.Whywaituntilitistoo latetostart?Donotpassadeathsentenceonmenwhomaybecompletelyunawareofthe dangertheyarein.Whatyoudon’tknowCANhurtyou. Howard IhadyearlyPSAtestfordecadeswithoutproblem.In2003,myGPsawthatmy PSAalmostdoubledinthelastyearthoughitwasstill“normal”foramanmyage–63.He sentmetoaUrologistwhofeltsomethingminorbutdecidedtodoabiopsy.Itappeared fromthebiopsythatsurgerywasnecessary.Heassuredmethatitwasbeingcaughtearly enoughthatitshouldbetotallyeffective.Itturnedoutthattheadvanced,aggressive, grade5;cancerwasoutsidetheprostateandintotheseminalvesicles.IrequiredHAT, followedin2008byradiationandHAT. IfIdidnothaveannualPSA’s,thiswouldn’thavebeendiscoveredintimetosave mylike! Louis ThePSAtestisaverycrudescreeningtest.Swollenprostateorprostatitisalsocan causeelevationofthenumbers.JustasinitialaidsscreeninghastheWesternBlottestfor confirmation,thereisthefreePSA(morecostlythanstandardPSA)thatisusedby urologisttohelpdetermineifthesomewhatinvasiveandcostlyprostatebiopsyis warranted.Inmycase,myPSAhadbeenapproximately10forseveralyearsbeforeI becameeligibleforMedicare. ThefreePSAtestresultsformewereontheborderlineforpredictingcancerrisk. TheDREexamhadbeenpalpablelumpfree.AssoonasIbecameeligibleforMedicare,the neededprostatebiopsywasdoneforwhichearlycancerwasfound.Surgerywaschosen Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page110 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. becauseofitsproventrackrecordandlong‐term,thesideeffectswouldbelessthanwith radiationtherapiesshouldtheinitialsideeffectsresolvethemselves.Whatshouldreally bedoneisthatbeforebiopsyisperformed,thefreePSAtestbedonefirsttohelp determineifthereisanynear‐termneedforthebiopsy. Hopefullybettersecondarytestswillbecomeavailablethatwouldhelpdistinguish betweennon‐aggressivecancersandthosethatneedtobeaddressedsoon. Arthur Asamanwhosefatherandgrandfatherbothhadprostateissues,Ireally appreciatebeingabletogetmyPSAleveltested. AlthoughmyPSAlevelwasonlyslightlyhigherthannormal,thetest,alongwithabiopsy onmyprostatewashowIfoundoutthatIhadcancer.LuckilyitwasfoundearlyandIwas abletogetitearly. AsafatheroftwoyoungmenIhopetobeabletoencouragethemtogettheirPSA levelstestedatayoungage.InsurancecoverageforPSAtestingisveryimportanttome. Gary PSAtestingfoundprostatecancerforme.Mygrandfatherdiedofthediseaseandit wasaverydifficultandpainfulwaytodie.Iwas65whenitwasdiscoveredandIhadmy prostateremoved.Thesideeffectsofsurgerywerenothingcomparedtowhatmy grandfatherwentthruandIwoulddothesameifIhadtodoitoveragain.RecentPSA testsareveryminutesothecancerisgonefrommybodyforwhichIamgrateful. Bryant ItwasaPSAtestthatledtothedetectionofmycancer,andnowaftertreatment (externalbeamradiation)IhavePSAtestsevery6monthstomonitormyprogress.Not payingforPSAtestingisgoingtohaveaseriousfinancialeffectonmeasthetestisthe bestoptiontodetectanyre‐occurrencesothatIcanbeginadditionaltreatment. Anonymous hePSAtestsavedmyHusband’slife.Thedoctorsenthimtolocallabtodrawblood asastandardprocedure.WhenthetestresultscamebackhisPSAwas10.1whichisway outoftherangeofNormal.Wehaditrunagainandonlytoseeitwentupevenhigher. ShortlyafterthathewasseenbyaUrologistandwasdiagnosedwithProstateCancer.He didn’thaveanyofthetypicalsystems,soneedlesstosaywewereshocked.Atthetimehe wasonly49yrs.old.Aftertwosurgeriesandaseriesofradiationprocedure,thankyou Lordandweareblessed1.5yrs.later.Asofmatter,wehadanotherPSAjustdoneandthe resultscamebackhisPSAwas‐.01whichisperfect.AgainwithoutthePSAtestingand Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page111 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. coveragebyourinsurancecarrieritmighthavebeentoolatetodoanythingandwe wouldnotstillhavemyHusbandwithustoday. Anonymous Aftermybrother,age76,wasdiagnosedwithprostatecancerthatwasveryfast developing.Afterhisdeathat78IbegantohaveaPSAtestaboutevery3mos.MyPSA wasaround2.6formanyyears,butroseto4.2in3mos.whenIwas77.MyGPsentmeto aUrologistwhodidabiopsywhichshowedcancerontheleftsideofmyprostatewitha Gleasonratingof7. IimmediatelywentintoradiationtreatmentonanIMRTmachineandhavesince beencancerfreebasedonaPSAnearzerofor3yrs.IbelievemonitoringmyPSAmay havesavedmefromgoingthroughthehorrorthatmybrothersuffered.I’dhatetoseethe PSAtesteliminatedincaseslikeminewherethereisasiblingorfamilialconnection.In thosecasesPSAtestingfrequencyshouldbesteppeduptodetectasuddenchange. Dan EightyearsagoIwasthefifthmaninmyfamilytobediagnosedwithProstate Cancer.Now,threemorehavebeendiagnosedandsuccessfullytreated.Beforemy experiencetwohaddiedfromProstateCancer.IamgladtosayIplayedasmallroleinthe lastthreegettingtested,findingtheirelevatedPSAandfollowingthatupwithabiopsy whichfoundallthreeneededtreatment.Theyweretreatedandweallaredoinggreat. Side‐effects?Yes,butaliveandenjoyingchildren’sweddings,grandchildrenandgreat‐ Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page112 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. grandchildrenbeingborn,productive,richandfulfillinglives.Somethingthatmightnot havehappenedifwehadnottalkedtoourdoctorsandhadourPSAtested. Terry IwasdiagnosedwithprostatecancerwhenmyPSAwas4.2in2002.Aftersurgery thecancerwasfoundtohavespreadtothelymphnodesandseminalvesicles.Thesurgery didnotwork,andtoday9yearslaterI’mstillfighting.IfIhadnothadthePSAtestitis highlylikelythatbynowIwouldbedead. Timothy Between2004and2005,Isaw10patientsinaprimarycaresettingwithPSAless than4butonexam,theyhadpositivefindingsontheirDigitalRectalExam(DRE).They endedupgettingbiopsiedandbeingdiagnosedwithprostatecancer.IknowthatthePSA isnotadefinitivetest.Fromthisexperience,IsetmyownthresholdPSAto2.5andif greater,Iwillneedabiopsy.In2005,myPSAwas3andsoIrequestedtobebiopsied sinceIwas45yearsoldandAfricanAmerican. Unfortunately,Iwasdiagnosedwithprostatecancerfromthatbiopsy.Three urologistssuggestedthatIwatchandwaitandnotdotreatmentbutfollowwithbiopsy andPSAin6months.However,being45yearsoldatthattimewithtwoyoungsons includinga1yearoldson,IdidnotwanttotakeachancetowatchandwaitsinceIknew atleast2patientswhodiedintheirfiftiesfromprostatecancer.Fortunatelyforme,Ihad aRoboticLaparoscopicProstatectomyandafter6years,Iamfortunatetonothaveany problemwithincontinenceorerectiledysfunction. IcontinuetoseemyurologistonceyearlyforaPSAandDRE.IamhappythatIdid getthePSAtestandIrecommendthePSAasascreenformengreaterthan45yearsold. Anonymous ItwasonlymyacceleratingPSAin1997thatleadtothediagnosisofmyprostate cancerearlyenoughtobeactuallycured.At13yearsaftertreatmentmyPSAisstill undetectableandbecauseIchoseacenterofexcellence,Ihavenosideoraftereffects.Had InotbeentreatedtheprobabilitythatmyGleason7cancerwouldhaveescapedthe prostateglandwasveryhigh. ThePSAtestisavaluablediagnostictool.Theonlyproblemsarecausedby incompetentdoctorswhodonotknowhowtousetheinformationprovidedbythetest. Anonymous PSAtestdiagnosedmystage4prostatecanceratage42.WithoutthetestIwould bemuchworseoffandmaybeevendead. Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page113 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. Anonymous ThePSAsavedmylife.Iama46yearoldAfricanAmericanManandmyfirstPSA Testin2002.MyPSAwas10.AfterabiopsyfoundthatmyProstatewas85%cancerous. (9of12sampleswascancerous) Ididn’thaveanysymptomstoindicatethatIhadProstateCancer.IfIhadn’tgotthe PSAmycancerwouldhavespreadbeyondtheprostate. HowelsewouldIhavefoundoutthatIhadProstateCancer? Joe Atage50whenmyinternistfirstsuggestedaPSAtest,Iwasunawareofthetest. For7yearsitslowlyincreasedbutwasbelow4ng/ml.BecausemyDRE’swerenegative, myinternistthoughtitwasduetoanenlargedprostate.WhenIcontractedprostatitisat age58anditdidnotresolvetotallywithantibiotics,hesentmetoaurologist.Bestthing thathappenedasIhadanaggressivecancer,butwaswellcontainedinthecapsule.The PSAhistorywasamajorreasonwhytheinternistsentmetothespecialist. Mypointintellingthisshortstoryisthatthepatientisnotawareofwhattestsare availabletohimwhenheishealthyandnotfocusedonanillness.Ifmyinternisthadnot suggestedthePSAtest,hemaynothavebeeninclinedtosendmetotheurologistassoon ashedid.Untilabettertestisdeveloped,weneedthistest.Oncediagnosedbasedona biopsy,thereisenoughinformationavailabletomakegooddecisionswiththedoctorona courseoftreatmentorwatchfulwaiting. Ken MyGPhadbeenorderingPSAtestsforquiteafewyearswhenat54myPSAwent from3.2to3.8inoneyear.Notabigjump,buthehadmeseeaurologistforabiopsy. Justasmallpercentageofcancerwasfoundinbothlobes,Gleason6.SoIoptedforaretro‐ pubicradicalprostatectomy.Post‐opbiopsy,stillGleason6butIhadapositivemargin.It wassuggestedbymyurologistandoncologistthatIhaveradiation. TheradiologistorderedaCATscananddiscoveredatumorinmykidney.Sounder theknifeagain.WhenIwashealedfromthatIstartedradiationtreatmentandasthatwas ongoingmyPSAroseslightly.SixmonthslatermyPSAstabilizedat0.02andit’sstillthat atfourplusyears. WhensomeonecantellmethatmyGleason6wouldnothaveturnedintoaGleason 7andthenan8,9or10andalsothatmypositivemarginwouldnothavespreadthough outmybodyandmetastasizedthen,andonlythen,wouldIsaythatthePSAtestisnot worthdoing. Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page114 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. Greg MyPSAwasstableat2.5foryearsandthenbeganclimbingto3.5andthen5.715 monthslater(age69).AttherequestofmyfamilydoctorIwentforabiopsywhich showedT1cGleason6.AfterextensiveresearchandmortalitytablesthatshowedIhad21 yearslifeexpectancy,Ihadopenradicalprostatectomy,onMay19,2011.Thepost operationpathology(Gleason7T2c)showedthecancerwasmorewidespreadand advancedthanthebiopsyindicated. Ihadnoadverseeffectsfromthebiopsyandminorincontinenceforthefirstthree weeksafterthesurgery,withnonesincethen.Ihadanexcellenterectilefunctionpriorto surgeryanditiscomingbacknowwithpenilerehabilitation. Robert AlthoughmyPSAneverwentabove5,IstillneededupwithProstateCancer.Itwas 5+yearsof2.5to3PSAlevels,apositivefamilyhistory(Myfatherhaditanddied10 yearsafterhisinitialsurgerywithcomplicationsofthecancer.),2negativebiopsies although1ofthemhad“highPIN”andthenmyinsistenceoftheevenhighercosturine test(isitPCAsomething?)thatfinallyconvincedmyurologisttodo‘onemore’biopsy. Andthatonefoundit! AllofthatsaidthesteadyriseofmyPSAandthatitwouldnotloweralongwithall theotherImentioned,iswhatsavedmylife. ThePSAandDREiswhatwehavefornow.Althoughnotperfect,bothhavesaved manylives.Ihavemetprostatecancersurvivorsfrom38yearsofageto80.All,started withahigherthanexpectedPSA. Thisnewinformationwithoutfurtherexplanationwilldoundoubtedlyconfuse manymenabouttheirneedtogetscreenedforprostatecancer. Anymanwhohashadorhasdealtwithatheprospectofprostatecancerwilltell youthattheywillgettheirPSAandinsistthattheirothermalefamilymembersdoso. Anonymous Iunderstandthattestingcanbedirectionalifthereisabigjump. IalsoknowfromexperiencethatmenareovertreatedforPC. I’monactivesurveillance–andusethePSAtestasaguide.Withadigitalexam. Ihavehadtwobiopsies. Thefirstshowedindolentcancercellsatapercentagethatmadesurveillancean option(alongwiththeotherrequirements). ThesecondbiopsyshowedonlyPINcellsoftheleastaggressivekind.Nocancer cells.AndmyPSAhaddropped. Thatwas3yearsago.Inthemeantime,myPSAhasbouncedaroundbuthasstayed inthisrange. Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page115 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. SoIknowthatunlessthere’sabigjumpinthePSA,Ican’tuseittodetermine what’sreallygoingonanymore…orsomyDr.tellsme,sincehewantsmetotakeanother biopsy.That’sthepractice–biopsyafterXyearstobesurethingshaven’tgottenworse. Exceptgoto3biopsiesandthereisrealconsequencesforsexualfunctioning. I’mnotsurewhattodoanymore.ButIdohavePSAtests2xayeartoseewhatmightbe happening. IftherehadbeenabigjumpIwouldunderstandtakingthenextstep. Withoutajumpthough,Idon’tknowwhattodo. Idoknowthathavingthefirstbiopsywastraumatic,beingtoldIhadcancerwas traumatic,andthenfindingoutitwas“indolent”andIdidn’thavetodoanything…well,all Icansayis,therehastobeabetterwayandbetterwaystodiagnose,image,etc. Manuel IamalivetodaybecauseofthePSAtest.IthoughtIwasperfectlyhealthy.APSA andsubsequentbiopsyrevealedthreeaggressivetumorsinsidemyprostategland, excisednearly17yearsago,oneofthetumorswasaboutreadytoescapethegland.Doing nothingwouldhaveguaranteedmydemiseandaveryslow,painful,costlyandmiserable death. Yes!Ihadsideeffects,butbeingaliveandadjustingtomy“newnormal”througha penileimplant,wasWELLWORTHIT. Tom FormethePSAtestservedasa“redflag”thataproblemcouldpossiblyexist.Inmy casewemonitoredthePSAlevelsforoverayear.Duringthatyear,thePSAlevel continuedtoincrease.AfterayearofincreasedPSAlevelsmydoctordidabiopsy,the resultofwhichshowedthatmanyofthesampleswere“positive”forcancer.Itwasthen thatweinitiatedradiationtreatment. ThePSAtestinghaslimitations,ITISANINDICATOR,andshouldbemonitored overaperiodoftime(likeinmycase)beforeadditionalactionistaken. Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page116 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. Dave IhadaPSAtest7yearsago,andmyDoctornoticedthatthruseveralyearsoftests thatmyPSAhadmadeasignificantchange,sohesentmeforfurthertests.Thefurther testsshowedthatmyProstatehadabulge,theytookasampleanditshowedcancercells. Ihadaprostatectomyandfor5yearsmyPSAwas.0000,thenafter5yearsIstarted showingsignsofPSA.006then.009,.08.07overthelast3years.MydoctorsaysIhave cancercellssomewhere,butwehavenoideawhere.HeissuggestingHormonetreatment, butIamresistingthistreatmentuntilmyPSAgoesover1.000 Phil BecausemydoctorgavemethePSAtestatmyannualphysicalshesawanincrease inmyPSAwithinoneyear.Iwenttomyurologistandhetook12biopsies.Oneshowed signsofcancer.ThreemonthslaterIhadtheDaVinciroboticsurgery.Asmallofamount ofcancerwasfound.Thatwas4yearsago.TodayIamcancerfreeandhealthy.Ifmy doctorhadnotperformedthePSA’sIcouldbewalkingaroundwithcancer.Ifthecancer hadnotbeendetectedearly,Icouldhavebeeninrealtroubleifthecancergrewand spread.Slowgrowingorfastgrowingitisstillcancer. Jan Iwasdiagnosedatage41in1993,beforemosturologistsknewmuchabout prostatecancer.LupronandADTatthattimehadonlybeenshowntogive12‐18months extrasurvival.MypresentingPSAwas13.6.Surgeryseemedthebestoption,anditwas basedonthatPSA.NowIknowthiswasamistake,aswastheexternalbeamradiation thatfollowed.IshouldhavesattightandwatchedmyPSA,waitingtoseeifabiopsywas reallynecessary. Bothtreatmentsresultedinincontinenceandpartialimpotence,withtheradiation causingrectalbleedingandincreasingincontinenceastheyearsprogressed.Ihavenever beeninremissionthesepast18+years,buthaveusedthePSAtomonitorthe effectivenessofthevariousformsofADTIhavebeenusing. OnecouldargueIwouldhavehadthesamefinalresulthadInothadthatPSAat age41,butat13.6andaGleasonof7thisseemsunlikely.ThePSAisusefulasa monitoringtool.Toobadsomanyurologistsandradiologistsabuseitsoaggressively, usingitasanexcuseforexpensivetreatmentsthatproducesignificantmorbidity.It’snot thePSAtestthat’saproblem;it’swhatignorantorunethicaldoctorsDOwithitthat’sa problemABIGproblem. Garth IdoubtIwouldbeheremuchlongerhadInothadaPSA,whichwasindicativeof possiblecancer.ThebiopsysureshowedCancer.Andaftersurgery,itwasdetermined Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page117 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. that(throughaPSAtest),ithadspreadbeyondthemarginsofmyProstate.Itwouldbe simplyTRAGICtomanymenwhowouldsufferHORRIBLEpainandsubsequentDEATH, withoutthePSAtest,earlydetectionisthekey. Rex Icouldprobablywriteabookbutnonewouldprobablybuyit.Wasdiagnosedin 1991byGPwhosaidIhadasmallpimpleonmyprostate.MyPSAtestcameinat11.6. HadsurgeryonJuly11,1991.Allnerveswerecut.Incontinentforaboutoneyear.PSA startedtoadvanceafter1996.MyPSAonJune2011measuredat2.8.Nowadvancing about0.4perannumandam88yrs.younggoingon89andhopingtobeshotbyjealous husband. Tom Haveyoueverwatchedamandiefromadelayeddiagnosisofprostatecancer?Itis apainfulwaytodie.Iwatchedmyfatherdiefromprostatecancerthatwasnotdiagnosed untilafterithadmetastasized.Hadhebeendiagnosedwhenthediseasewasstillina treatablestate,hemightstillbewithus. ThereareNOclearlydiscerniblesymptomstoprostatecancerbeforeit metastasizes.IntheabsenceofregularPSA/DREscreeningandsubsequentbiopsies, thereisnoothermeansofearlydetectionforthisdisease.Sountilyourtaskforcecan recommendanothermeansofearlydetectionwhilethisdiseaseisstillinatreatableform, therecommendationfromyourcommitteeisundulyharshandill‐conceivedand,if followedbymeninthiscountry,willresultinmanyMOREneedlessearlydeaths!Living longerwithmanageablesideeffectsispreferabletodyinganearly,painfuldeath. Charles AfterdoublingofmyPSAfrom2to4inoneyearandpositive12sitebiopsyofmy prostate,Ireceivedaradicalprostatectomyatage68foraGleasonscore6cancer.Since thenmyannualPSAhasbeennon‐detectable,and8yearswillbecomingupthis November.Ihavehadonlypartialerectionssincesurgery,butthisismanageablewitha pumpdeviceandtherearemanyotherwaystointimacywithmywife.Thereisnowayto knowwhatmyhealthwouldbenowifIhadneverhadaPSAtest,butwhatiscertainis thatthecancerwasremoved.Ithankmyexpertsurgeonforsavingmylife. Anonymous PSAtestingsavedmylife!Iwas49yearsoldwhenaroutinephysicalcheckup includedPSAtestingduetomyage.ResultcamebackataPSAof5.Doctorindicatedthat weshouldre‐checknextyearandseetrend.IsaidNO!Let’sdomoretestsnowtoseewhy Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page118 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. PSAof5.Twoweekslater,resultscamebackofcancercellsdetectedat4of12core samplestaken. PSAtestingsavedmylife.Now,12yearslater,IhaveaundetectablePSAlevel. Bruce WithoutPSAtesting,IwouldbeDEADnow.Ihadnosymptoms,nourination problems,butmyDr.,after3straightslightincreasesinmyPSA,foundatinyhardspoton myprostate.BiopsyshowedGleason3+4.Startedonhormoneblockers,thenseed implantsafterEBR.PSAdownto)for5years,thengraduallyincreasedto11.5in2003. Hormoneblockerswouldnotworkanymore=hormonerefractoryprostatecancer. StartedonKetaconazole,Avodart,ZometaandLupron.PSAwentdownto0.3andhas stayedbelowthatlevel WithoutPSA,weareconsigningmanymentohighGleasonandlittlehopefor prolongedlifeinatradeforalittle(verylittle)painfromabiopsy.Afteralltests,watchful waitingisstillpossiblesowhytakethechancethatyourcancerwillbefoundtolate. Bob Iama73‐year‐oldmanwhowasdiagnosedwithProstateCancerinthespringof 2010.ThediagnosisresultedfromarisingPSA,forwhichmyurologistrecommendeda biopsywhenitmovedfrom3.73to4.75insixmonths.NothingwasdetectablebyDRE. ThebiopsyrevealedprostatecancerwithaGleasonscore7(3+4).Ididalotofreading andthoroughlyinvestigatedtheoptions,includingactivesurveillance(whichmyurologist thoughtwouldbeareasonablechoice). Idiscusseditallwithspecialistsininternalmedicine,urology,medicaloncology, andradiationoncology,aswellaswithnumerousotherprostatecancersurvivorswho hadundergonevariousformsoftreatment.Onthebasisofallthisinformationand medicaladvice,Ielectedtoundergoacourseofexternalbeamradiationtherapyusingthe Calypsosystem.Fifteenmonthsaftercompletionofthetreatment,myPSA,whichhas beentestedeverythreemonths,appearstohavestabilizedbelow0.4. IhavebeenactivelymonitoringmyPSAformanyyearsbecausemyfatherdiedof prostatecancerin1974attheageof63.ThiswasbeforePSAtestingwasavailable. HisdiseasewasdiscoveredbyDREafterhebegantoexperienceurinarysymptoms.By thenitwastoolate;ithadalreadymetastasizedtothebone.Animmediateorchiectomy wasperformed,andhewastreatedwithsome(thenveryexperimental)chemotherapy, whichmadehimverynauseousandunabletoholdfooddown.Aboutayearandahalf later,ashisbonepainandotherformsofsufferingbecameunbearable,hefinallydecided toendhisownlife. Myfatherwasacardiovascularsurgeonandaprofessoratourstate’sonlymedical school,sohewasmedicallyknowledgeableandhadaccesstotheverybesthealthcare.He wasphysicallyfitandcarefulabouthishealth.IbelievethatifPSAtestinghadbeen Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page119 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. availabletohim,hewouldhavehaditasaregularscreeningmethod,detectedhiscancer muchearlier,andmighteasilyhavelivedanother25or30years. Twoyearsago,mybrother‐in‐law(andclosefriendofalmost60years)diedof prostatecancerafteralongbattleagainstthedisease.Histreatmentincludedaradical prostatectomy,subsequentandrogendeprivationtherapy,severalclinicaltrials,andin theend,intensivebutlargelyunsuccessfulpalliativecare. Heexperiencedseverepainbeginningabouttwoyearsbeforehedied.Hewas completelybedriddenforthelastsixmonthsofhislife,aboutfourmonthsofwhichhe spentinthehospitalwithlargelyuncontrollablepain.Notonlywasthisaparticularly miserabledyingprocess,butI’mcertainthatthecostofhismedicalcareafterdetectionof thediseasemusthavebeenwellinexcessofamilliondollars.Inhiscase,allofthiswas theresultofhisownlackofinformation(orcarelessness,dependingonone’s perspective). HewasnotregularlymonitoringhisPSA,andthediseasewasdiscoveredonlyas theresultofalifeinsurancephysicalwhichrequiredthetest.Iconfidentlybelievethatif hehadbeenmonitoringhisPSAregularly,hisdiseasecouldhavebeendiscoveredintime forsuccessfultreatmentandhewouldbeenjoyingahealthylifetoday,justasIam. I’mwellawarethatifIhadchosennottohavemycancertreated,Imighthavelivedjust aslongasIwillnow,andwithoutsomeoftheunpleasantsideeffectsthatIamnow experiencing.Butitwasmychoicetomake,basedonasmuchinformationasIcould gather. IamsatisfiedwiththechoicethatImade.IhaveapeaceofmindthatIwouldnever havehad,givenmyfamilyhistory,withoutthebenefitofPSAscreening.Iwouldnothave beenatallhappytohavebeendeniedascreeningtoolthatwoulddetectthiscommon formofcancerandenablemetomakeaninformeddecisionregardingtreatment. Iamfranklyoutragedbythepanel’srecommendationthatroutinePSAscreening bediscontinued.Admittedly,it’sanunassailablefactthatPSAscreeningleadstosome invasiveandexpensivetreatments,oftenwithdifficultandundesirablesideeffects,of menwhosecancerwouldnothavebeenfatalifleftuntreated.ButIalsoknowthatmany thousands,perhapshundredsofthousands,ofmenarealivetodaywhowouldotherwise havesufferedugly,painfuldeathshadtheynothadthisinvaluablescreeningtool availabletothem. It’scrystalcleartomethattheanswerisnottodiscontinuescreening,butratherto screenasmanymenaspossible,andmakesurethatthosewithelevatedPSAarefully informedoftheoptions,including,incasesofearlystageand/orlow‐gradecancer,active surveillanceorevensimplenon‐treatment,andthepotentialconsequencesofeachoption. Therearealsovaluableprognostictoolsavailable,suchastheMemorialSloan Ketteringnomogram,toaidmeninassessingtheprobableconsequencesofeachoption basedontheirindividualdiagnosticprofiles. Withfull,objectiveinformation,itshouldbethepatient’sdecisionhowtoproceed. Manyofuswhohavebeensuccessfullytreatedasaresultofearlydetectionandare Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page120 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. leadinghealthy,activelives–andespeciallythoseofuswhohavewatchedlovedones suffertheagoniesofdeathfromthishorribledisease. David Atahealthfairin1994Ipaid$25togetaPSAtest,thinkingitwasunnecessary becauseIfeltsogoodandhadnosymptomsorproblems.IwasshockedtofindIhada PSAof15.4andadvisedbymydoctorbrothertohaveaneedlebiopsywhichrevealed mediumgradecancer. HadInottakenthatPSAtestI’dbedeadnow. Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page121 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. Michael Ihadbloodworkdoneaboutayearago,andthePSAresultswereprovidedtome asa“mistake.”Thenumbershoveredaround8.0,theyarenowunder4.0.Ireadaloton line,joinedonlinecommunities.Ispokewithaurologist,andafterallthetalkandscary information,Ichosetomonitormynumbersovertimeinsteadofdoinganyinvasive procedures.IhavehadseveralDRE,allcomingbacknegative. ProstateCanceristypicallyoneoftheslowestformofcancersoutthere–andin myhumbleopinion,Iseealotofover‐treatmenthappening.Couldtherebesomething there,sure,andImayalsodieofsomethingtotallyunrelatedtoProstateCancer.Inthe end,itisapersonalchoicethatwemake–andwesternmedicinedoesnothavetobethe onlymannerwithwhichtodealwiththeissue. Robert Mydigitaltestwasnegative,butIhadothersymptoms,painatorgasm,frequent urination,soPSAtestwasprudent.ResultwasPSAof18andfollowupbiopsyshowed fourquadinvolvement.Prostatectomyfollowedandtumorhadspreadtoseminaland beyond.Radiationfollowedfouryearslaterandnowafter22yearsIhavestarted hormonesat86.MyaddedyearsIowetoPSAalert Randy PSAbeingcheckedsavedmylifefromProstateCancer.Iwas47whenIwas diagnosedbyabiopsy.Ididn’tthinkaboutmyprostatebeingwheremybodywould developcancer.LosingbothmymotherandaunttocancerIassumedIwasatriskbutI didn’tknowaboutPSAtesting.ThankfullymyDoctorfoundthePSAincreaseandreferred metoaUrologist.RadiationBrachytherapydidn’tkillitbutthispastJulyIhadaradical prostatectomytoremovemyprostateandthecancer.Myfirstpost‐operativePSAwas lessthan0.1. TheonlywishIhadisamorehumanewayofdiagnosisvs.thecurrentbarbaric biopsy.Ihad2performedandIdon’twishthatonanyman. Ray IwasdiagnosedviaPSAwithprostatecancerin1993andhadaprocedurein1994. HadInothadaPSA,IfeelsuremycancerwouldhavespreadandIwouldnotbehere today.PSAisnotasurething,butIdon’twanttobetheonehavingprostatecancer,not knowingitandallowingittospread.AslongasthepatientandDoctor'sdiscussthe gains/losses,goods/badforalltheprocedures,thenthepatientshouldhavethefinal decision. Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page122 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. Anonymous InJanuary2007,attheageof67myPSAhadgoneupfrom2.41to3.78in16 months.MyGPreferredmetoaurologistwhoperformedabiopsy.Theresultwascancer in2outoftwelvenodesGleason8.InFebruaryof2009,Ihadnon‐nervesparingrobotic surgerytoremovetheprostate;thepathologyreportconfirmedtheGleason8.Ihadextra prostaticextensionbutnegativemargins.Sincesurgery,myPSAhasbeenat.005.Ifit wasn’tforthePSAtestmyaggressiveGleason8PCawouldhaveprobablyspreadtoother partsofmybodyincludingmybones.Icountmyblessingsforfindingoutaboutthissilent killerwhenIdidandIthinkthePSAtestandmydoctor’sawarenessiswhatledtomy discovery. Anonymous Myfatherandgrand‐fatherbothhadprostatecancer.Ihavetestedeveryyearfor thisviaasimplebloodtest(inexpensive,too).Whenthetrajectoryheadeduponmychart, thedoctordidabiopsyandfoundcancerinmostsamples.MyPSAhadgonefrom1.0to 11overa5yearperiod.Haditnotbeenforthis,Iwouldnothavehadabiopsy. Robert MyPSAnevergotoutofthe“normal”rangebutoverthecourseoftwoyearsmy PSAwassteadilygoingupafewpercentagepoints.Thankstomyurologisthe recommendedabiopsy,foundcancer,removedtheprostateandafterwardsfoundoutthe prostatewasloadedwithcancer.Iwas50yearsoldatthesurgerydateandamnow53! PleasedonotdoawaywithPSAtesting. Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page123 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. Max IthinkthatwhoeverdecidedthatPSATestingisnotnecessary,isjustplainstupid. Iaman8yearprostatecancersurvivorwhowouldnothavebeenherehaditnotbeenfor aPSAtest,therebyfindingoutearly.Thesamehappenedtomewithachestx‐raythat foundamalignantspotinmylungtherebywhichmeantIhadstage1Alungcancerwhich isnotfinesinceitwasdetectedearlyandamnowdoingwell.PSAtest,thoughnot100% accurateiscertainlybetterthannotestatall. Mark PSAtestingwastheonlythingthatcaughtmyprostatecancer,whichtheurologist toldme,was“slowgrowing”….butpost‐surgeryturnedouttohavesomeslowgrowing cells,butmostwasaggressive!Therealsowasvirtuallynonoduleandwasnotpickedup onrectalexamasitwasontheinternalsideofthegland. ThePSAtestisfarfromperfect,butitisthebestwehaveatthemomentandmadethe differenceinmylife. Jim In2001,whenIwas46,ourfathertoldusthathehadbeguntreatmentforprostate cancer.Imentionedittomydoctoratmyannualphysical,andhetookaPSA,whichcame backat16.8.Ihadabiopsyandcancerwasdiscovered.TheDREwasnormal.Iunderwent aprostatectomyandradiationafterwards.Tenyearslater,I’maveryhealthy56‐year‐old. IfIhadn’thadthePSA,IbelieveI’dbedeadorsufferingfromterminalcanceratthisage. Anonymous MyhusbandrequestedthePSAin2004becauseofhisfamilyhistory:hisfatherand severaluncleshadprostatecancer.Hisprimaryphysicianwasreluctanttorunthetest sayingitwasexpensiveandinaccurate,butheranthetestanywayanditwaswellwithin thenormalrange.ThefollowingyearhisPSAwasrechecked—againreluctantly—and hisPSAhaddoubled.Asaprecaution,hewasreferredtoanurologistforabiopsy.His Gleasonscorewasasurprising9. HeunderwentTomotherapywhichdestroyedthetumorandhisprostatein January2006andwasdeclaredcancerfreethatyear.However,in2007thefollow‐upCT andBoneScansrevealedthecancerhadmetastasesthroughouthisskeletalsystem.After alloftheavailablestandardtreatmentsandanexperimentaltrialofIMC‐A12with Mitoxantrone,andaverybrieftrialofaPARPinhibitor—thediseasemetastasesthrough hisspinalcord. Weknewfromthebeginningthathisparticularprostatecancerwouldwininthe end—butheparticipatedinseveralexperimentaltrialsandbasicallygavehislifefor research.WouldhehavebeenbetteroffwithoutthatinitialPSA?No,hewouldhavedieda Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page124 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. miserabledeathwhilehisphysiciansdeterminedthecauseofhisvagueachesandpains. Anyonewho’shadbackpaincanattestit’sjustnottakenveryseriously!Theopportunity forvaluableresearchwouldalsohavebeenlost.Itangersmethatsolittleemphasisis placedonmen’shealthandwellbeing. Anonymous Afterseveralyearsofbeingtreatedfor“prostatitis”andPSAreaching8.7,abiopsy camebackwithPCAandanumberof“abnormal”cells.Consideringthepossibleoptions, familyhistoryofcanceranddiscussionswithotherswhohadchosendifferenttreatments, Ichosetohaveitremoved.Thedeedwasdone7‐2002.TherearedayswhenI thinkadifferentchoicemighthavebeenbetter,butoverallmychoicewasbestforme. ThereisnodoubtinmymindthatthePSAtestisthereasonmydiagnosiswasmadewhen itwasandIfeel,extendedmylife. Ifmemoryservesmecorrectly,ithasnotbeenthatmanyyearssince mammogramsforearlydetectionofbreastcancerwerecontroversial.Untilanoted person,wasitBettyFord,wentpublicwithherdiagnosis,breastcancerwasnotthat public.Myfeelingis,untilmencanbecomemorepublicindealingwiththesideeffectsof PCA,thefighttocontinuecoverageofthePSAtestwillprobablybelost.Foralmost10 yearsmyPSAhasbeen“undetectable.” Anonymous IampresentlybeingtreatedforD2stage4prostatecancer.Myprimarycare (FORMER)justblewitoffwhenmyPSAwentfrom2.4to22anddidn’tsoundanyalarm evenwhenitwentupto55.IthinktostoptestingforPSAisthedumbestthingNextthey willbetellingwomennottohavemammograms. David Myfatherdiedahorribledeathfromprostatecancer27yearsagobeforethePSA testwasavailableashewasnotdiagnoseduntilhiscancermetastasizedthroughouthis body.HisfinalunspokenmessagetomewastomonitormyselfsoIhavebeengettingthe easyandinexpensivetestsfor23years.In2007myPSAspikedandithadgoneupover .75intheprevioustwoyears. Ihadabiopsyandhadprostatecancerinthreequadrantsbutitwascontained.I receivedradiationtreatmentswithCyberknifein2008andamdoingverywellfouryears later.MyPSAis.30andIamneitherincontinentnorimpotent.ThePSAtestallowedmeto monitormyownhealthsoIdidnothavetoexperienceahorribledeathlikemyfather. ThePSAtestisonlyaguidelineforprostatecanceritisnotaprobleminitself,in factitdoesformanymenwhatitdidforme,alertedmeaboutprostatecancerbeforeit metastasized.Theproblemiswithhowdoctorsinterpretit.Thereareotherissuestobe Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page125 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. consideredlikethevelocityofchange,theGleasonscore,andfamilyhistory.Doctor’sneed tobetrainedandtheyneedtoinformpatientsonhowtogatherinformationandeducate themselves.Yourtargetforconcernisfocusedonthewrongpartofdiagnosis;thetestis simplyatest.Howitisinterpretedandusedistheissue. IamwalkinglivingproofoftheimportanceofthePSAtest;itshouldnotbe abandonedatalluntilabettertestisfound. David MyPSAbeganaslowupwarddriftatage55.At57itwasstillonly2.64,butthe rateofchangewasnoticeablefromtheyearbefore.Myfamilydocsaid,we’llwatchit,and checkagainnextyear.IaskedforafreePSAtestwhichwasonthelowside,butdidnot suggestcancer.FamilydocdidaDREwhichwasnegative.Ihadnoothersymptomsof prostatecanceratthistime. Iwasstillconcerned,soIwenttoseemyurologist.Healsosaidthatwewould watchit,butfirstwantedtodoaDRE.ItoldhimthatIjusthadone,buthewasinsistent. Hediscoveredanodule!AbiopsyrevealedaGleason9! HadInotbeendiligentwithPSAtesting,Iwouldhavehadfullblownmetastatic prostatecancerbeforeitwasdiscovered. PSAtestingabsolutelysavedmylife. Eldon Twenty‐oneyearsagoIattendedafreeprostatescreeningeventanddiscoveredI mighthaveprostatecancer.APSAtest,ultra‐sound,andbiopsyconfirmeditandIhad surgery.RegularPSAcheckupsrevealedarapiddoublingvalueandfouryearslaterI underwentradiationtherapy.ThentwoyearslaterwithstillrapiddoublingIhad completehormoneblockagewhichIfollowedfortwoyears.Duringthistimeeverysix monthsmyPSAremainedataverylowlevel.Ihavecontinuedthesixmonthtestand threeyearsagomyPSAbeganrising.ItookLupronshotsforthreeyearsandnowam watchingaslowrise.Withoutmysixmonthtests,Imaynothavemadeitthislong. Myfatherdiedofprostatecancer,soIfeelthetestgivesmehopeandguidancefor treatmentfrommyurologist.Iwouldbefearfulwithoutthetest. James EarlystageprostatecancerHASNOSYMPTOMS.Yet,earlystagecancercanbe treatedandcured.Latestagecancercannotbecured. Atage50,inprimehealth,Ineededaphysicalforanewposition.Itrequireda physicalexam.MyenlighteneddoctorsuggestedaPSA.Theyweredrawingbloodfor othertests. Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page126 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. MyPSAcamebackat39withaGleason8.IwassuccessfullytreatedandIamhere toseemychildrengetmarried,grandchildrenborn,andfinishmycareer. IFIDIDNOTHAVETHATPSATEST,IWOULDNOTBEHERETODAY. MenhavetheRIGHTtoknowiftheyhavecancerandiftheydotomakeatreatment decisionthatisrightforthem. Anonymous InJune2010myhusband,whowasthen59,hadbeensufferingwithdreadfulpains inhisbackandlegsplusnauseaformanymonths. AmonthearlierhehadbeenadmittedtohospitalwithsuspectedGallbladder problemswhichprovednegativeandhadalsobeentreatedwithphysiotherapyfortheleg painforweeks.HisPSAondiagnosiswas67,ifhehadbeenofferedthissimplebloodtest fromage50whichiswhatourconsultantsuggestsshouldbeavailableforallmenwe wouldpossiblybelookingforwardtoalongandhappyretirementinsteadofavery uncertainfuture. HewasfinallydiagnosedwithAdvancedMetastaticProstateCancerafterabone scan. Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page127 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. Bob ItwasmyfirstPSAtestatage50thatledtotheultimatediscoveryand confirmation18monthslaterthatIhadcancer.AnditwascontinuedrisingPSAresults thatkeptthedoctorsinvolvedandonthepathtoadiagnosis.Sowithoutthatsingle/first PSAtestandsubsequentrisingPSAtestresultsdrivingthedoctorstocontinuelookingfor theissue,there’snowayanyonewouldhaveknownIhada4+3Gleasonscoretumor. AndIcertainlywouldnothavepursuedanycourseofaction.LikewhywouldI?Never‐ everwerethereanyphysicalsignsthatanythingwasamiss….talkaboutasilentkiller.I canseeitnow.“HiDoctor,I’minthebestphysicalshapeofmylife,myhalfmarathon timescontinuetoimprovemonthaftermonth,sopleasewouldyouconsiderdoingsome exploratorysurgeryorinvasiveanalysisjusttomakesureIdon’thaveprostatecancer?” Yeah,right. InthepasteightyearsIhavetestedvirtuallyzerowhenitcomestoPSA,andnow wonderwhatI’msupposedtodoasafollowup;hope,trustintheallmightythatthere’s nochanceofrecurrence,waittillthere’ssomeotherphysicalsign,whatexactlyamI supposedtodo?Whattheheck,whydoanytestingforanything,ifnottodriveearly possiblediagnosisandincreasedlevelsoftesting? Finalthought. Isawmyfatherpassduetocomplicationsfromprostatecancer,andwhilethe officialcoroner’sreportstatedheartfailure,itwasheartfailureduetothosecancerbased complications.Andwhilehefoughtcancerformanyyears,Icanonlythinkwithouthis earlyPSAtests,andthefollowonprocedures,theprostatecancerwouldhavekilledmany yearsearlier. Clifford MyprostatecancerwasnotdetectedbyaPSAtest.MyPSAlevelsremained relativelylowthroughtheyears.Butsymptomsleadmetoayoungurologistthatfoundan abnormalprostatefromaDREexam.Abiopsyconfirmedanearlystageprostatecancer. I’minfavorofusingsciencedatatobestdeterminewhoneedsmoretesting.Family history,symptoms,andDREarebetterindicatorsthanthePSAtest. Weneedabettertestforcancerouscells.Insteadofspendingmoneyunnecessarily onPSAtests,let’sspendthatmoneyondevelopingabettertest. Anonymous ProstateCancerhasaffectedmyfamilyinahugeway.Mypaternalgrandfather passedawayfromprostateCancermanyyearsago.Myfather,nowage72wasdiagnosed withprostatecanceralmost14yearsago.Heunderwentsurgeryandisdoingwell,but hasnobladdercontrol.Hissurgerywasmajor,asthenewtechniquesofroboticsurgery Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page128 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. weren’tavailableatthattime.Hedevelopedkidneycancerasaresultoftheprostate canceralmost7yearslater. Thekidneycancerwasdiagnosedwhenheattendedanultrasoundscreening hostedbyhischurch.Ididaseriesof9ultrasoundscreeningsonthebodyallwith ultrasoundtechnology.Alargemasswasfoundonhisrightkidney,whichagainresulted inanothersurgery.Thankfullythecancerwascontainedinonlyonekidney.Mybrotherat age45wasalsodiagnosedwiththisterribledisease.Hedidhavetheroboticsurgeryand otherthanbladderissuesisdoingwell. Havingthesescreeningsdonearesoveryimportant.Theyarepreventive,but shouldbedoneannuallyateveryannualphysical.Insuranceshouldbecoveringthese screeningsastheyarelifesaving.Thesescreeningskeepusawareofwhatisgoingonand ifabnormalitiesarefound,helpidentifythembeforetheybecomemajor.Theysavelives, period. Carl WithoutPSAtesting,myprostatecancer,aGleason9,wouldnothavebeenfound untilitwastoolateandIassumeIwouldnotbealivetoday. PSAtestingshouldnotbedroppeduntilabettertestisavailable. Michael Iwasoneofthelowriskmenwhoundertheproposedruleswouldnotgettested. At51yearsold,withnocancerinmyfamily,mydoctororderedthetest.PAcamebackat 14.28,asubsequentbiopsyshowedaGleason9,aggressivecancer,andIamstillhere aftersurgery,radiation,hormoneandadvancetherapies.Mycancerwasfoundintimeto control,nottocurebecauseithadalreadyspread. Today,15yearslater,Iamimpotent,butIamalive,Ihaveseenmygranddaughters growupandwhilewearewatchingthecancerstarttospreadasthetreatmentsfailaPSA testboughtmesomegreatyearsthatIwouldhavemissedwithoutit.Aslongasthe doctorsunderstandwhatthetestresultsmeanandcanprovideareasonableexplanation oftheneedforrepeatedtestsandcarefulconsiderationofwhattodoifPSAisrisingand whatthesideeffectsoftreatmentcanbe,thereisnobettertesttohelpsavelives. Anonymous Inmyannualphysicalin2000,myprimarycarephysicianperformedadigital rectalexamination.Hefelthardnessononesideofmyprostate.IgotaPSAtest.Itwassix plus.Iwasreferredforabiopsy.Theresultsshowedaggressivecancer.IhadanMRIanda bonescan.Bothindicatedthecancerwasstillencapsulated.Formethechoicewasclear —surgicalremoval.Iwantedtobecancerfree.Iamstillhere.ThePSAtesthelpedme.In Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page129 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. myviewitisagoodtooltohaveinthetoolbox.Let’skeepitinmedicineuntilsomething betterisfound. Steve Mystoryisalittledifferent.MyPSAdidnotrisesignificantlyandmyprostatewas notenlarged,yetIwashavingdifficultyinurinating.Myurologistdidascopeandfounda smallgrowthinternallyinmyprostate.Headvisedmethattheyweremostgenerally benignandadvisedmetohave“green‐lightlaser”surgery.Thisprocess“burnsthegrowth awayandissupposedtomakeiteasiertourinate.Healsosaidthatthissurgerynegatively affectstheabilitytogetanerectiononlyabout1%ofthetime.PSAwas2.25. ThisiswhereImademymistake!Ibelievedthatthis“doctor”knewwhathewas doing.Ihadthegreen‐lightsurgery,nobiopsywasdone,andIwentdowntheroad thinkingeverythingwasgoingtobepeachesandcream.Ihaven’thadanerectionorbeen abletohaveintercoursewithmywifesince!Congratulations,I’mpartofthe1%! Now,fastforward21/2years.IhadmyPSAcheckedinAprilof2009anditwas 2.5.Iwastoldthatwasnormalforaman58yearsofage.DuringthemonthofJune,I won’tboreyouwiththebuild‐up,abouthowsickIgotandcouldn’tfigureoutwhyIwas alwaystired,hadnoenergy,ambition,weakandhadaheadachethatonlyice‐packswould relieve.Ifinallywentmyfamilydoctortohaveabloodtesttoseeifitmightbespinal meningitis. Tomakealongstoryshort,bynowtheprostatecancerhasspreadtomybone marrow….throughoutmyentirebody.MyPSAis285andI’mtoldthatIhave11/2to2 yearstoliveandthatthecancerhasbeengrowingfor3‐4years. Itellyouallofthistosay…PSAtestaren’tperfect.Theydon’tworkallofthetime.BUT… it’sthebestdamnthingthatwehavegoingrightnow!Thatandbeyourownbest doctor!!!!Don’tjustsetbackandbelieveeverythingyour(possibledumbass)urologistor doctormighttellyou!Bewillingto“FIRE”yourcurrentdoctorifyoudon’tfeel comfortablewithwhathe/shemightbetellingyou. Thegoodnewsisthatithasbeennearly21/2yearssinceIwasdiagnosedandI amfeelingGREATandhopetobestartinganewtreatmentthatIexpecttogiveme3–5+ moreyearsofgreatliveandISTILLDOMYOWNRESEARCH!!!Newtestingisonthe horizon,betterthanPSAbloodtesting;therearenewandexcitingtreatmentsthatare comingdownthepipeline……Juststaypositive,stayinformed,stayeducatedand“STAY INCHARGEOFYOUROWNHEALTH!!!” Anonymous Iwasdiagnosed17yearsago.ThankstoalowPSAIremainedrelaxedand continuedtolivea‘normal’life.WithnoPSAIsuspectmyconcernwouldhavebeenfar greater.Itallowedmetofunctioninanormalmode. Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page130 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. Jack IhadmyfirstPSAwhenIwenttomyUrologistforakidneystoneproblemandI thinkIwasabout53yearsold.MyPSAwas3.5andmyurologistsuggestedIgofora biopsyjusttomakesureeverythingwasalright.SoIdidandeverythingwasfine.Atthe timemyuncleonmymother’ssidehadProstateCancerhewasabout70yearsold.Then mybrotherwhowas10yearsolderthanmehadProstateCancer.Ididn’tgotomy urologistforacoupleofyears,butIhadbloodworkdoneformyregulardoctor. WellIhadthePSAscriptstillinmywalletandgaveittothelabwhenIhadthe bloodwork.MyPSAwentto4.5andmyurologistsuggestedthatIhaveabiopsydone becauseitwentupandtomakesuretherewasnocancer.IaskedhimifmyProstatefelt differentandhesaidno,infacthesaidhedidn’tthinkthebiopsywouldshowIhad cancer.WhenhecalledmeandtoldmeIhadcancerIcouldn’tbelieveit.Ifitwasn’tforthe PSAtestthecancermighthavemovedoutofmyProstateandmademylifemiserable. PerhapsIwouldn’tbearoundtotellyoumystory. ThePSAtestsavedmylife. John FiveyearsagoIwenttomydoctorforanannualphysical.Theonlyabnormality discoveredinmyexamwasaPSAlevelone‐tenthofapointintotheabnormalrange.My doctorsaiditwasprobablynothing,buthesuggestedIcomebackinafewmonthstohave itcheckedagain.WhenIwastestedagainmylevelhadrisen.Iwenttoaurologist,who suggestedIgetabiopsyonmyprostate.ItturnedoutInotonlyhadprostatecancer,butit wasgrowingatsuchanabnormallyfastratethatitwasalmostatthepointof metastasizing.Ihadtohaveaprostatectomyassoonaspossible.HadInothadthatfirst PSAtestandthenthreemonthslaterafollow‐upsecondone,Iwouldnotbeheretoday. Rick Ifitwasn’tforPSAtesting,Iwouldprobablybedeadorclosetoitbynow.Backin 2008,Iturned65andarrangedfortheMedicaresponsoredmedicalexam.Ihavebeena Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page131 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. healthymalewithabsolutelynohealthissuesthatIwasawareof.Aspartofthemedical exam,bloodwasdrawnandmydoctorselectedPSAtestasoneofthetestcriteria.The PSAtestresultcamebackas34whichwasabigredflagthatsomethingwasup. ImmediatelyafterthatIvisitedtheurologistwherehedidthefingerwaveanddidfeelan abnormality.AbiopsylaterdeterminedthatIhadstage4advancedprostatecancer. Ofcoursemyprognosisisnotgreat,butwithoutthePSAtest,Iprobablywouldnothave gottenthestartonattackingthecanceruntillateronandtimeisoftheessencehere. GettingridofthePSAtestjustdoesn’tmakeanysensetomeasitseemslikeitwilldo moregoodthanharm. Wendy Myhusbandwasdiagnosedin1996attheageof46.HehadaGleason9andabase PSAof24.4.Ahardnodulewasfoundwhileattheurologistforanothercondition. PriortothatwehadnoknowledgeofprostatecancerorofthePSA.HediedatApril2007 attheageof561/2.Heleftbehindthreesonswhowere18,19and23atthetime.There isnodoubtinmymindthatifhehadstartedhavingyearlyPSAsandDREsthathewould stillbealive.Insteadhewasgivenadeathsentence.ThePSAmaybeflawedbutitsaves lives.ThedeathstatisticshavedecreasedsincethePSAhadbeenused. Sam ThePSAtestprovidedanalertinthatitdoubledfrom1.8to3.6intheyear betweenphysicals.AftereliminatinginfectionsandotherreasonsforaPSAtorise,a biopsyconfirmedthattherewasatumor.TheTumorhadinvadedthecapsulewalland wastryingtoexit.AfterremovaloftheprostatethepastnineyearsofPSAtestshas confirmedthatthethreatofprostatecancerspreadingappearstobegone. ThePSAtestnotonlygavemeearlywarningbeforethecancercouldspreaditalso reassuresmethatthecancerhasnotreoccurred. Giventhatsuccessinfightingcancerisearlydetectionwhileitiscontained,why wouldanysanepersonremovethisearlywarningfrombloodtests? Bob PSAtestmaynotbethegreatestbutitisallwehavefornow&isaguidelinefor Urologisttogoby.WithouttheTestmyprostatecancerwouldnothavebeenfound. Iamnowintreatmentbecauseitwasfound&havehighhopesthatallwillbegood. Idon’tknowwhoyoupeoplethinkyouaretodoawaywithoneofthefewguideswemen havetofindprostatecancer.Prostatecancercaseseachyeararemore,thenbreastcancer butbreastcancergetsalltherecognition. Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page132 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. Anonymous MyPSAtesttaken10yearsagowasat10,inaweekitmovedupto12.Ithenhada DRE,andabiopsy,bothconfirmingIhadcancerwithaGleasonscoreof4+5=9.Follow‐ upsurgery,radiation,hormone,andmostrecentlychemotreatmentshavekeptmealive. InparticularthechemodramaticallyloweredmyPSAscore,andalsoreducedthe numbersofmets,andsizeofthecancer.Thereducedmetsandcancersizewere confirmedwithboneandCTscans,andcoincidedwiththePSAdroppingfrom130.31to 2.21. ThePSAscoresarenotfullproof,butthey’rethebestwehavefornow,andhelp menandtheirdoctorsdeterminecourseoftreatment,ifany. Erik Iwasdiagnosedwithprostatecancer2and1/2yearsagoatage55,becausemy then‐primaryphysician,whomIsawevery4monthstomonitormytype2diabetes,was unbeknownsttomerunningaPSAtest,somethingIknewnothingof,everytimeIsaw him.Atonemeeting,ashereadthebloodtestresults,whichweresofarexcellent,he suddenlymurmuredanominous,“Oh,oh,”andproceededtotellmethatImighthave prostatecancer,duetoarapidriseinmyPSAacrossashorttimespan,explainingthetest tomeforthefirsttime.Hesentmetoaurologistofhisrecommendationfortesting. Abiopsyrevealedminuteamountsofextremelyslowgrowingcancerinmy prostate.Nevertheless,theurologistinsistedthatImustgettreatmentimmediately,either intheformofsurgeryorradiationseeds.Heforcefullyrecommendedsurgery,sayinghe didn’tdotheradiationhimself,thinkingitnotasgood,buthedidsayhecouldrecommend Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page133 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. adoctortotalkwithwhodiddotheradiation,ifIwanted.Idid,andtookhis recommendation.Atthesametime,Iaskedwhy;ifthecancerwassosmallandso nonaggressive,wecouldn’tjustkeepaneyeonitforawhile.Hereactedforcefully,telling methatdosowouldbe“irresponsible,”probablyfatal,andthatIwouldhavetofind anotherdoctorifIwantedthat. Theradiationdoctorenthusiasticallyinsistedthathistreatmentwasbestandbid hardformypatronage.WhenIandmyhusbandaskedhimwhywecouldn’tjustmonitor thesituation,hesaidthatthatwasn’tdonebyrespectablephysicians,thoughhecouldn’t explainwhytooursatisfaction. Ireturnedtomyurologist,thistimewithmyhusband,afterresearchwedidonthe Webrevealedthe“watchfulwaiting”and“activesurveillance”approaches.(Ihadnot knownaboutthemwhenIaskedmyquestionsaboutmonitoring.)Heprofessedneverto haveheardofthem,norcouldheansweranyofmyquestionsabouthowsurgeryor radiationmightaffectmysexuallifeasagayman.Indeed,despitepracticingformany yearsinManhattan,hesaidthathehadneverbeenaskedsuchaquestionbefore.WhenI toldhimthatIwasmostinterestedinfindingadoctorwillingtoatleastentertainsuchan approach,hesuddenlysaidthatifIwanted,hewoulddoactivesurveillancewithme, despitehavingsoforcefullycondemneditinthepreviousvisit.Ideclined. Iwantedadoctorwhohadactuallydoneitbefore,ifIwasgoingtopursuethat course. OntheWeb,IdiscoveredsomethingcalledHiFU,offeredinEurope,Canada,the Caribbean,andSouthAmerica,thatwasstillinclinicaltrialsinAmerica.Ifoundonesuch trialwasacceptingapplicants.ImadeanappointmenttoseeifIwaseligibleforthattrial. Uponmeetingwiththedoctorrunningthetrial,Ialsoaskedaboutactivesurveillance. Afterthoroughdiscussion,heagreedthatIwasanidealcandidateforit,after explainingthatevenHi‐Fu,thoughlessinvasive,hadpossibleunpleasant,permanent consequences.Hetoldmethathehadbeenusingactivesurveillancewithqualified patientsformorethan20years,andthatnoonehadeverprogressedtometastasized cancer,thoughobviouslysomehadeventuallyhadtohavesurgeryorradiation. Ihavebeenpursuingactivesurveillancewithhimsince,andallhasbeenfine,with myPSAtestsconsistentlythelowesttheyhaveeverbeen,andsubsequentbiopsies showingevenlesscancerthanpreviousones.IoftenthinkthatifIhadneverhadthose PSAtests,IwouldbeunawarethatIhadanycancerandwouldnothavetogothrough twiceyearlyvisitsandbloodtests,aswellasperiodicbiopsies. It’snotformetosaywhetheranybodyshouldorshouldnothaveaPSAtest.ButI cancompletelyunderstandthereasonsbehindtherecommendation,particularlybecause myfirsttwourologistssofiercelytriedtopushmeintotheirtreatmentspecialty,without concernformyparticularneeds.Ihavenohistoryofprostatecancerinmyfamily,andam generallyinexcellenthealthexceptforthediabetes,whichIcontrolwell.YetIwaspushed forcefullytodoaggressivetreatmentthatcouldchangemylifeforever,andnotforthe better. Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page134 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. Ittookalotofmentaleffort,andmuchemotionalaggravation,toresisttheir pressure,researchthingsformyself,andthinkclearlyastowhatwouldbebestforme.I amveryhappywiththechoiceImade.Istillregrethavinghadtomakethechoiceatall. Jim WithoutPSAtestinginOctober2003,Iwouldnotbeherewritingthis.Duringa routinecheckup,thebloodworkcompletedshowedaPSAof16.Initiallyitwasthoughtto beaninfectionbutwhenIwenttoaurologistitwasdeterminedthatabiopsywas necessary.Ihadnosignsofanyproblemsandthoughtthatthediseasewasan“oldman’s” disease.Formy51stbirthdaythediagnosiswasprostatecancer.Itwasaggressiveandmy prostatewasremovedinFebruary2004.Exceptfora“bliponthescreen”in2005 everythinghasbeenfine.IoftenthinkwhatwouldhavehappenedwithoutthePSA screening.Asmyurologisttoldme,bythetimeIwouldhavehadsymptomsitwouldhave beentoolate.Althoughpeoplethinkthisisnotthebesttestavailable,itisastartingpoint. John Myfatherdiedofprostatecancer,beforetheadventofthePSAtest.Mybrother hadhisprostateremovedafterarisingPSAindicatedthepossibilityofcancer,anda biopsyconfirmed. Withthisfamilyhistory,IbeganaroutineannualtestofPSAatage50.Byage61, myPSAbegantorise.Initialbiopsydidnotrevealanymalignancy,butmyPSAcontinued torise.Asecondbiopsy6monthslaterrevealedmalignancy,andIbeganProton treatmentsinApril2004. IcontinuetoannuallyreviewmyPSA,whichremainsbelow1.0sincetreatment. Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page135 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. Linda MyhusbandDavehasastrongfamilyhistoryofProstateCancer.Hisfatherpassed awayfromPC.HistwobrothersalsohavePC.DavebeganhisPSAtestingatage50 becausebackthenthatwaswhatthedoctorsrecommended.Hewasdiagnosedatage58 whenhehadaspikeinhisPSA.He’snow61andstillbattlingthebeast.Ifhehadn’thad thePSAtestperformedIwouldbeawidownow.ThePSAtestisanabsoluteMUSTuntil anotherdiagnostictoolisavailable. Richard IfIwouldhavebeengivenaPSATestalongwithmyphysicalsmyprostatecancer wouldhavebeenfoundearlier.IwasgivenaPSATestonlyafterIhaddeveloped symptoms.Iwishinsurancecompaniesanddoctorshadbeenmorewillingtopayfor/give thetest. Anonymous MyPSAwasalwaysverylow(aroundthe1.0range)untilage71‐72,whenalow readingdoubledinlessthanayear.BiopsyrevealedGleasonscoreof4+3.Prostatectomy andfollowupradiationdidnotrenderPSAundetectable,sohadtotakeLupron.PSA undetectableforabout9months,butnowPSAbecamedetectable,sobackonanother Lupron.PSAisnowthesoletesttogaugeifexistingcancercellsaredormantorgrowing. Milton Inthesummerof2003,whenIwas85yearsold,aroutinePSAshowedasharprise toabout6.Abiopsyshowedanaggressivecancer(Gleasonnumber9).IunderwentIMRT radiationandchemicalcastrationandwassymptomfreeforaboutfiveyears,afterwhich myPSAbegantoriseagain.Ithenhadcryotherapywithresultsthatdidnotlast,following whichIwenttoamedicaloncologist,whoputmeonprednisone,whichappearstobe working.Iamapproachingmyninety‐thirdbirthdayandamhavingunrelatedheart problemsthatcouldbefatal,inwhichcasemycancerwillbecured’ Ihavesurvivedforeightgoodyears.IamconvincedthatifIhadnotbeentestedfor PSAIwouldnowbelongdead. Louis ThankstothePSAtestmyprostatecancerwasdetectedearly.WithoutthetestImaynot beheretoday.Ifeellikeitsavedmylifeandwillsavemanymore.Rightnowit’sallwe haveanditneedstobecontinueduntilthereissomethingbetter.Itindicatedariseinmy PSAandthedoctorfeltitwasreasonenoughforfurthertestwhichprovedIhadProstate Cancer.EarlydetectionisthekeytosurvivalandthePSAtestwillhelpdojustthat. Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page136 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. Anonymous Myinternforthepast10yearshasbeentestingmyPSAwiththelipidpanelformy annualphysical.ThePSAIneverreallyknewwhatitwas.However,onetimeIlookedat mybloodtestandInoticedmyPSAwas2.86anditwasalwaysaround1.3forthepast10 years.Mydoctorsaidnottoworryaboutit.Iwas59yrs.oldatthetime.Iwenttoa urologistformyannualexamandhegavemesomeantibioticsthinkingitmightbean infectionfrommyrecentkneereplacementsurgery.ThePSAdidcomedownto2.3.He thentestedme90dayslateranditwas2.6. Hesaidhewouldnotworryaboutit;howeverIdidandgota2ndopinion.This doctortesteditin90daysanditwas2.0andthen2.6.Afterayear,thedoctordecidedI neededabiopsywhichIreallydidnotwant,buthesaidthatwouldbetheonlywayto reallyverifyifIhadcancer.IhadthebiopsyandyesIhadtwocoresthatwereverysmall butcancer. IfreakedoutandthereisnotadaythatgoesbythatIdonotthinkaboutit.Ihave hadtwobiopsiessincethefirstandthecancerisstillshowinghoweverIchosetodo watchfulwaiting.ThedoctorsaysIqualifyforthathoweverthereisnosurewayof knowingifthecancerisaggressiveornot.ItisagambleandIknowit.Howeverthe surgeryistooscaryformerightnowandalltheliteratureconfusesme.IwenttoCityof HopeandtheheadsurgeonnationallyacclaimedsaidIwoulddowellwiththesurgery andwantedtooperate.Iwenttoamajormedicalcenterandmetwiththetopsurgeonof theGoldenStandardnervesparingapproachandhesaidIcoulddowatchfulwaiting. Everydoctorhasadifferentopinionanditisreallyuptotheindividual.Mostofmy friendssayIamcrazy,getitout.Iamtakingitonedayatatimeor90daysatatimeuntilI Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page137 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. havemynextPSAtest.Ichangedmyeatinghabitsandeatallgreens,whitemeat,nosugar, nosweets,(cheatalittle)noalcoholorsmoke,exercisedailyandmyPSAwentaslowas 1.0ThedoctorsaysthatreallydoesnotmatterandIstillhavecancer,howeverhefeelsif itstartsseeingactivityinthePSAupwardandthebiopsy(every12‐18months)shows morecoresorGleason7thanIamhavingthesurgery. ThePSAtesthaschangedmylife!Nottothebetterinthiscase.Iwouldratherhave notknownandjustlivedlife.Ontheotherhandmaybeitwillsavemylife,howeverthe effectsofthesurgeryarenotpleasant.TheolderIgetIcantaketheeffectsandtheyare morepercentagewisetohappen.Theyoungeryouarethebetteryouwillbounceback.I amtoldfromonedoctorwhowasveryhonestwithmeisthatincontinencewillgoaway withinayear95%ofthetimeinmyagegroup60‐70.Impotencyoddsarenotsogoodand thatthe%ofimpotencyinmyagegroupis35%evenwithtakingViagra. Esteban ThePSAtesthassavemylife.ItwasaPSAtestresultof35andthebiopsythat foundstage3cancerinmyprostate.Myprostatewasthenormalsizeforamanmyage, 55yrs.oldatthetime,butthebiopsyshowedcancer.MyDoctorexplainedallthe treatmentsandtheirprosandcons.Ielectedto“removethedamnthing.” WellthankstotheDaVinciRoboticprocedure(Ihighlyrecommendit)Iamstillhere. Theyfoundtheprostatewas75%cancerous;ithadspreadtomylymphnodes, seminalvesicles,someofthenervesintheareaandaspotonmycolon.Allremoved.YesI cannothaveanerectionandamabitincontinent,butitisasmallpricetopayforbeing alivetobewithmywifeandplaywithmygrandchildren. Anonymous In2002Iwasdiagnosedwithprostatecancerandwastreatedwithimplantationof radioactiveseeds.Sofarsogood.Every3to6monthsIamcheckingmyPSA,theonly evidenceatthistimethatIamstilloffthehook.Untilitwillbeanewtestwhichcould provethesameasPSAtest,forthepeaceofmineofpeopleasIam,thePSAtesthastobe legalandpayablebyinsurance. Roger AsuddenriseinmyPSAalertedmydoctortosuggestabiopsy.Thebiopsy indicatedthatindeedIdidhaveprostatecancer.Ithenchoseroboticsurgery,whichIfeel ultimatelysavedmylife.ThepathologyreportaftermysurgeryindicatedthatinfactIhad afastgrowingformofprostatecancer.Thistookplaceoverfouryearsago.My surgeon/urologisthasmesubmitPSAresultseverysixmonthstomakesurethatthereis norecurrence.IthinkmyfamilyphysiciansavedmylifebyrequestingPSAresults.The digitalexamdidnotgiveanyindicationthattherewasaproblem. Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page138 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. Patrick IhadaroutinePSAtesteveryyearstartingatage60,itstayedat4.0untilage65 whenitjumpedto5.0.MydigitalexamshowednothingandIhadnoothersymptoms.I optedforabiopsyandwefoundGleason7cancer.Iwastreatedwithradiationandseeds andhavebeencancerfree(PSAat.2)eversince.Ihavehadminimalsideeffects. BottomlineregularPSAtestingsavedmylife!!! Brian PSAtestingledtomydiagnosisofanaggressiveGleason8cancerin2005thathad spreadbeyondtheprostatebed.ThePSAratingof4.34wasbarelyabovethe4.0 thresholdusedbymostfamilydoctorstodiagnoseapotentialproblem,butwasenoughto refermetoaurologistforabiopsy.Subsequentradiationandhormonetherapyledtoa goodoutcome.SinceIhadnosymptomsotherthanahighPSAnumber,thattest absolutelysavedmylife. Anonymous MyhusbandwentinforhisyearlyexamandhadaPSAtest.Thatwas2yearsago. HisPSAcamebackextremelyhigh.Hehadabiopsywhichcamebackcancerous.Thebone testanditshowedthecancerhadalreadyspreadtothebone.Hewasimmediatelyputon atreatmentplanand“sofarsogood.”IfnotforthePSAtestfinding,Ihavenodoubthe wouldnotbealivetoday. Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page139 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. Glen MyfatherhadprostatecancerasdidI.ThePSAtestsfollowedbyabiopsylast DecemberconfirmedmycancerwithaGleasonscoreof4+3=7!Atahealthy73yearsof ageandseveralancestorswholivedintotheirlate80sandmid‐90s,mycancerneeded treatmentlestIdieyoung!WithoutmyPSAtests,Iprobablywouldhavebeengonein5to 10years.NowIhave25years+/‐tolookforwardto.Ifinishedmyprotontherapyat LLUMCwithnosideeffectsonJuly1,2011.ThePSAtestwillmonitormyfuture. Thomas IhaveprostatecancerwhichwasdiscoveredwithaPSAtest.Thepathologyreport aftersurgeryindicatedthatmycancerwasmoreaggressivethanthebiopsy(postPSA test)hadindicated.IfnotforthePSAtestIwouldnothavehadanytreatmentandIexpect thatmylifewouldhavebeensignificantlyshortened. Paul ThePSAtestwasresponsibleforearlydetectionofhighgradecancerin2000 which,asaurologicaloncologistmyself,Iamcertainwouldhavebeenlesssuccessfully treatedifallowedtopresentclinically,withsymptomsthatanadvancedstageprostate cancerpatientwouldhave. David At41yearsoldIwenttomyDr.forbloodworktocheckmycholesterol.Without evenaskingme,hecheckedPSAanditcamebackatan11.IhadatumorwithaGleason scoreof9/10.Itis21/2yearslaterandifhedidn’tchecktheboxforPSAthereisavery goodchanceIwouldnotbehererightnow. Itisincomprehensibletomewhytheymightputlimitationsonthistest.How wouldIhaveknownthatIhadadvanceprostatecancerat41yearsold?Icertainlyvalue mylifeandsodomytwoboyswhoarenow9and10yearsold. Anonymous PSAtestingandfamilyhistorywerethetwofactorsthatenabledmetobe diagnosedearly,treatedandcuredofprostatecancerattheyoungageof49.The combinationofthosetwofactorsallowedmetowatchmyprogressovera7yr.periodofa PSAbaselineof1.0thatjumpedto1.6andthen2.3ina3monthtimeframe.Theensuing biopsyconfirmedmydiagnosisofprostatecancer.Iwasotherwisesymptom‐less. Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page140 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. Terry PSAtestinghaskeptmealive–literally!Atage51IswitchedPrimaryCare Physicians,andmynewdocorderedaPSAduringmyopeningphysicalwithhim–itcame back4.5–slightlyraised.Yes,thiscancomefromanumberofissues–notonlyProstate Cancer…sowebegana3monthwait–andthenranthePSAagain…a5.3.Ok–itwentup– why?Gotoseeaurologist,whodoesultrasoundanalysisofmybladderandtheProstate area…startamonthofCiprotoseeifitmightbeinflammationoftheProstateoranother BPHrelatedproblem. RedrewthePSAaweekfollowingtheendiftheCipro,andit’snowa6.9…NOWit wastimeforabiopsy…thePSAwasadiagnostictoolusedtodeterminethiscourseof treatment. Asitturnedout,mybiopsywaspositiveforCancer–andalthoughinAugustbone scanandMRIshoweditcontainedwithinthecapsule,bythetimeIhadanopenradical prostatectomyinthefirstweekofOctober,ithadescapedthecapsule,starteduptheneck ofthebladder,wasinthemusclewallsurroundingtheProstate,andhadinvadedthe seminalvesiclesand2lymphnodes…mybiopsyGleasonscoreswerea6,four7?sandan 8,butfollowingpost‐oppathology,itwasdeterminedthatIactuallyhadaGleason9 cancer–thescalegoesfrom1‐10,with10beingmostaggressive,somine’sreallybad!I wentfromnothinginFebtofull‐oncancerin6months. Isthisslowgrowing?Absolutelynot!IfIhadnotbeentestedwhenIwas,Itruly believeIwouldbeneardeathnow–IhadNOsymptomsofanysort–andsincediagnosis, I’vemetmanypeoplewithGleasonscoresof7orhigher.Whereonearthdothese “experts”gettheirdata?YesIknowpeoplewithverylowPSAnumbers,butthisshows theydon’tneedtogoanyfurther. Gunther In1998,anundertheradar3.56PSAleadtothediagnosisofastageIVcancerthathad invadedtheseminalvesiclesandbladderneck.Now,Imonitorrecurrentcancerwiththe PSA.IamthankfulIhavethetool. Marvin ThePSAisonlyonetoolandthelessaggressivetoolthatwehavetoday. IdonotrememberwhenIstartedhavingPSAasapartofmybloodwork,butin2005it becamehighenoughthatIhadbiopsydone.Thatisveryaggressivetome.Itcameback positive.SowithoutPSAandDRAIwouldnotknowifIhadprostatecancer. Isit100%–no. Itisonlyonetool. Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page141 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. Ed MyfatherdiedofPCaatage72.IhavebeengettingPSAtestssinceearly50's.In 2006PSAshowedasignificantincreaseandabiopsyshowedPCainsmallamount.Iopted foractivesurveillanceandhavebeenonthatsince.IgetPSAevery3mos.andabiopsy annually.IandmyurologistusethePSAasaguide.Ithasremainedrelativelystableandif itshowssignificantincreaseweagreetoanotherbiopsy. PSAhasbeengoodforme,butIunderstanditandonlyuseitasaguide.Without thePSAIwouldhavenoguide.Iam70nowandhavebeenonASforfiveyears,butgrow increasinglyconcernedasIapproachtheagemyfatherwaswhenhedied.Iwantto continuetousethePSAasaguideunlesssomethingbettercomesout.Iaminexcellent healthandhopetostaythatway. Al Iwasinmy60’sandwasbeinggivenaDREatthetimeofaneachannualphysical. WhenImentionedthatmyfatherhadprostatecancer,IwasthereaftergivenaPSAtestat eachphysical.Iknewonlythatmyfatherhashisprostateremovedandjustassumedit wasduetocancer.Atage66myDREwasnegativeforcancerbutmyPSAhasrisen considerably.AsaprecautionIwasreferredtoaurologist.AsonogramandDREappeared tobenegativebutabiopsywasdone–resultspositive.Asecondbiopsywasdonetoseeif thecancerhadspread–resultspositive.Anoperationforlymphnoderemovalwas carriedouttoseeifIwastreatable–withresultsfinallynegative.Afterbriefhormone therapyandradiationtreatmentanaggressiveformofprostatecancerhasbeen eliminated.Inowhavebeencancerfreefor10yearsandenjoygoodhealth. IfIhadnothadanannualPSAtestdone,IfirmlybelieveIwouldbedeadand unabletomakethisresponse. Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page142 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. George Ican’timaginenotbeingabletohaveannualPSAtests!Althoughtheyhavealways beennegative,thepeaceofmindtheybringispriceless.It’sonelesscancerthreatto worryaboutwhentherearesomanycancersthatcannotbedetecteduntilit’stoolate!At myage,impotence&evenincontinence,isasmallpricetopayvs.thealternative.I’mtold allmeneventuallygetprostatecancer,butit’sstillimportantthatwepreventitaslongas possible. Maybe,ifmenhadmorenationalawareness&recognition(suchasa“prostate cancermonth”or“marchesonprostatecancer”asaredoneallthetimeforwomen),we mightsomedayhaveaslongalifeexpectancyaswomen? Robert Myprostatecancerwasdetectedatanearlystage.Givenmyrelativelyyoungage, surgerywasrecommendedanddone.Becauseofthistest,Inowhavealongerlife expectancy. Steven IfIhadnothadmyPSAtestdone,Iwouldnothavefoundmyprostatecanceruntil itwastoolate.Itincreasedby.6in1monthandwasconsideredprettyaggressive.Yes,my daddiedofothercausesat82andhadprostatecancer.Buthiswasslowgrowing. Howisonetoknow?Rollthedice?Ithinknot.Womenaren’tbeingaskedtoforegotheir mammograms(theywereaskedtoacoupleyearsago)andwhyshouldmenforegotheir PSA’s…allinthehopethattheydon’thavecancer.Iwas59whenminewasfound.With mylifeexpectancyof80orso,wouldIhavelivedthatlong? Inmycase,itwasn’tlikely.WhyshouldIoranyonehavetotakeachancewiththeir lifelikeisbeingmandated.Mustwemenfaceaterribledeathforthesakeoftesting? TherearemanyoptionstofollowupanelevatedPSAtest.Ihadbiopsiesthatconfirmed mydiagnosis.Ifithadn’tbeendetected,theoutcomewouldhavebeenmuchworsethan theEDI’vesuffered. Don IamalivetodayduetoaPSAtestdoneduringaregularphysical.Itcaughtmyvery aggressivecancerinitsearlystagebeforeithadescapedfromtheprostate.IfIhadgone muchlongerwithoutitbeingdetected,thecancerwouldhavebeenoutinmybody. Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page143 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. Ben Istartedscreeningforprostatecancerbecausemyfatherhaddiedofit.Ihadno symptomsrightupuntilIwasdiagnosedwithStage4prostatecancer.IfIhadnotbeen screenedIwouldprobablynotbewritingthistoday. Gerry MyPSAbeganescalating9yearsagowhenIwas68yearsold.Arectalexamnoted anoduleandabiopsyfoundcancer.Gleasonscoreof8Twospecialistdeterminedthatthe cancerhadnotlefttheprostategland.Ichoosetriplehormoneblockadetreatmentwhich workedwellbutin2007thecancerappearedtobeactivesoIhadradiation.Tothispoint myPSAhasremained0.01. Mybiggestproblemisverylowtestosterone.Icouldnotagreewithmypresent doctorthatshotsandthenpermanentimplantswouldbethebestsoIamseeinganew doctornextweek.IbelieveifundetectedbyPSA,thecancerwouldhavespreadandI wouldnotbewritingthisnote. George ItwasthechangeinmyPSAvaluethatrevealedthatIhadearlystagePC.Ihad roboticsurgeryandhaveneverlookedback.Fullfunction,noincontinenceandthebest partwasthatIgotridofsomethingthatnevergotalongwithmemostofmyadultlife. Anonymous I’maquadriplegic.Anormalphysicalprostrateexamcancausemetohave AutonomicDysreflexiawhichinturncausesextremelyhighbloodpressurethatcancause strokeorcardiacinfarction.PSAistheonlyalternativetomeotherthataphysicalexam undergeneralanesthesia. Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page144 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. Anonymous AfteraPSAscoreof4.9myDoctorrecommendedaBiopsyatage67,theBiopsy turnedoutnegativetomyreliefandnofurtheractionatthistime.Atmyfirstcolonoscopy atage50IlearnedIhadanenlargedprostateandlaterlearnedthathavinganenlarged prostatewillgiveyouahigherPSAreadingsojustbecauseyouhaveahighreadingit doesn’tmeanyouhavecancer. Mary InAprilof2005,myhusbandwenttohisdoctorforageneralcheckup.Hehad checkupsyearly.Whenthebloodworkcameback,hisPSAwasan8.Hisdoctorsuggested afollowupwithaurologist.Twomonthslater,aftermany,manytests,theurologist utteredthesewords,“well,it’sprostatecancerandit’sbad.”Thosewordsareforever etchedinmymemory. HewasdiagnosedwithStage4prostatecancerthatday.Billstartedtreatments withLupronandrespondedbeautifully.Hefeltbetter,PSA’scamebackbetter. Thenafterabouttwoandahalfyearsthenumbersstartedcreepingupagain.Thenext treatmentforhimwasTaxotere.Again,herespondedwell–forawhile.Afterashorttime inaclinicaltrialandvariousattemptsatdifferentchemo’s,mydearsweethusbandwho wastheloveofmylifediedalmostfouryearsafterbeingdiagnosed. IfitwerenotforthePSA,hewouldhavehadnoideahehadprostatecancer.I cannotimaginewhyanyonewouldthinkofdoingawaywiththePSA’sbecausetheyare not100%.Irememberhearingatonetimethatmammogramswerenot100%,yetnoone thoughtaboutdoingawaywiththem.Why?Becausethatwastheonlythingwehad. IfeelthesamewayaboutthePSA’s.Myhusbandhadnoriskfactors,nofamily historyofthisdisease,yetheisdeadfromit.IhavetoldmysontoinsistuponPSAtesting bythetimehe’s35,evenifhehastopayforithimself.Myhusbandwas49whenhewas diagnosedand53whenhedied.Waytooyoungtodiefroman“oldman’sdisease”.Thank youfortheopportunitytotellmystory. Anonymous Sincemyfatherandolderbrotherhavehadprostatecancer;Iamkeenlyawareofa yearlytestingforprostatecancer.Idothisyearly!IfthisisnolongeravailableIamata substantialriskoncomingdownwiththisdisease. Anonymous I’maprostatecancersurvivor.I’dhaveverylikelybeendeadwithoutthistest.My diagnosisofprostatecancerallbeginwithaPSAtestthatwastoohigh.Insteadofcutting backongivingthistesttomen,itshouldbemademoreavailabletolowincomemenwith governmentsubsidies Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page145 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. Anonymous Ihadseedimplantssome5yearsago.MyPSAwentfrom4.9tomypresentday levelof.005;therefore,I’mbeingdischargedthismonth.HealthwiseIfeelfine;however, itnowisdifficultformetomaintainanerection.Doingnothingwouldhavebotheredme. I’mgladIhadtheprocedure!! George IhadbeengettingannualPCscreeningswhenmyPSAstartedrising.Whenit reached4.7IoptedforabiopsyandwasdiagnosedwithPC.AfterlengthyresearchIopted forsurgeryandamgladIdid.Imeetmonthlyinaprostatecancersupportgroupwithmen whohavebeendiagnosed,goingthroughtreatment,posttreatmentorinrecurrenceand theyalsoaregladtheymadetheirdecisions.IrecommendmengetthePSAannually. Mark Iturned40yearsoldandfelthealthierthanIhadeverfeltinmyentirelife.My workplacesponsoredahealthfairandofferedmultiplebloodscreeningsatadiscounted price.Idecidedtohavetheentirebloodpanelrun,andthePSAwasoneofthosetests. AllofmybloodworkshowedthatIwashealthy,butmyPSAscreenwashigher thanwhattheyconsidereda“normal”range.Thenursewhoshowedmemyresultsatthe healthfairsuggestedthatIshouldseemydoctortofurtherevaluatewhythePSAwas elevated. antibioticshopingitwasaninfectioncausingtheelevatedscore.Irana2ndPSA aftertheantibioticsandthePSAwasactuallyhigherinsteadoflower….Ithenaskedforan f‐PSAtohelpnarrowdownifthecauseofmyelevatedlevelwasactuallycancer…Thef‐ PSAwasactuallylow,andIknewthenthatImostlikelyhadProstateCancer.Iwas referredtoaurologist,andtheDREwasactuallynormal.Therewasonlyonewayatthat pointtoknowifIhadcancerwhichisabiopsy.Thebiopsyconfirmedthatmyrightsideof myprostatewasengulfedwithcancer.Ihadnosigns,nosymptoms,andIwashealthy!!!!! ThePSAthatwasrunsimplybecauseitwasofferedatmyworkplacehasnodoubt addedyearstomylife!!!!!! HowintheworldcouldanyonearguewithmethatthePSAscreenisn’tneeded? Mystoryisonethatshouldscreamfromthemountaintopsthatourdoctorsshouldutilize thePSAfaithfully,often,andpromoteitforallmenstartingatage40.Ifmenhaveafamily historyofcancer(especiallyifamanhasfemalerelativeswithbreastcancerandmen withprostatecancer)IbelieveaninitialPSAscreenshouldbedoneatage35.IthankGod andmynurseforthePSAscreen! Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page146 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. Bob BecauseofaPSAtestshowingaratherhighreading,Iwentaheadandhada prostatebiopsy.ThatbiopsydidindicatethatIhadprostatecancer.Afteralotofresearch ofthevarioustreatments,Iselectedthebrachytherapyprocedureandhadtheradioactive seedsinsertedjustseventeenmonthsago.Sofar,myPSAhasbeendownquitelowbutifI amnotabletogetfurtherPSAtests,howwillIknowifthecancerhasremaineddormant orifithasstartedgrowingagain?? Robert ThePSAtesthelpedtouncovermycancerandwasjustbelow5atthetimeofmy surgery.AftersurgerymyPSAwentdownto.02andIhavecontinuedtogettestedevery 3months.MyPSAhasrisenveryslowlysincethenandasthenumbersrosegraduallythe pacequickened.ThishascausedalotofstressbutthenIlearnedthat1/3ofmen experience“biologicalfailure”aftertreatment,meaningthatthePSAriseswithoutany actualevidenceofcancer.ItisnowovertenyearssincemysurgeryandmyPSAis1.91 buthasbeenabitmorestableinthelastyearorso.Doctorsdon’ttellyouthatyourPSA mayriseandyetnotindicatecancerandthiscontributesgreatlytothestress. Kent PSAstartedgoingupoverafewyearsoftesting.Whenitgotto7,mydoctor startedcheckingforcancerbytakingprostatesamples.Thesecondtimearound,hefound cancer.Theindexcheckneverindicatedanyproblem.ThePSAwas,inmycase,thebest waytoalertustoaproblem.MysuggestionistostartPSAearlierenoughtohavea measuresticktouse.Cancerwasremovedusingradiationtreatmentsandalsoinserting pellets. Daryl BecauseofPSATestingIwasabletofollowmyrisingPSAuntilitspikedupto6.9in2011. Iwas58yearsoldatthetime.MybiopsyfoundaGleasonscoreof7(3+4)with40%ofthe sampleGleasonGrade4.ThisisnotbenignProstateCancerthat“youdiewith”Itisthe kindthatcankillyouifnotcaughtintime.IfithadnotbeenforroutinePSAtestingI mightnotbeheretoday.Ihaveknownafewmenthatwerenottesteduntilitwastoolate, andIwouldprefertodiefromsomethingelse. Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page147 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. Don Attheageof58IhadneverhadaPSAtest.Atthetimetherewasalreadymuch discussionabouttheneedforandthevalidityofsuchatestforanotherwise“healthy male”.IhadnosymptomsofPCaandwasattheurologistforafollowuponafirstever kidneystonediagnosis.HesuggestedaPSAtestandI,reluctantly,agreed.Camebackwith a21andsubsequentbiopsyrevealedcanceroustissuein12of12sampleswithaGleason gradeof7.ScansindicatedpotentialinvolvementofiliaclymphnodesandDREpositive. IhavesincehadradiationandHTasprimarytreatmentthatfailed.Iamonmysecond roundofHT.QOLisOKbutnosexualfunctionandhavedevelopedpre‐diabetesasaresult ofhormonenottomentionincreasedpotentialforcoloncancerandheartdisease resultingfromRTandHT. Notcurableatthistimeandnewer“vaccines”areoutrageouslyexpensiveforlittle ornobenefit.Mostlikelyhavenotextendedmylifeexpectancybasedonmyownresearch buthaveimpactedmyQOL. PerhapsmystorywouldbedifferentifIhadtestedatage50asrecommended.By thewayIhavenoinsuranceandhavepaidforallofmytreatmentoutofpocket. James I’vebeengettingPSAtestsforyears.Irealizeitisn’tthemostaccuratepredictorof PCa,butit’scertainlybetterthannothing.Ialsorealizethattherearefactorsbesides possibletumorsthatcanskewthetest.Andtheyneedtobetakenintoconsiderationand Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page148 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. addressed.MyPSAwentupayearagoanditturnedouttobeaurinaryinfectionthatwas treatedwithCipro.Aftera30daycourseofCipro,myPSAwasonceagain“normal”fora 71yearsofage. Mymainconcernisthatinsurancecompaniesgladlytakeourmoneyintheformof premiums.Buttheydotheirutmosttokeepfrompayingoutaftersaidpremiumsare banked. Anonymous ItwasthroughPSAtestingthatmyprostatecancerwasfirstdiscovered.Thehigh numbersledmyurologisttootherspecificteststodeterminetherealpresenceofthe cancer(biopsy).Withoutthefirst“flag”fromthePSAtest,Iwouldn’thavebeentreated (hormonetherapy‐seedimplant‐radiation)andbelivingcancer‐freetoday. Jeanette At41yearsofage,withnopreviousfamilyhistoryorsymptoms,myhusbandwas diagnosedwithprostatecancerthankstothePSAtest.Surgeryrevealedhisprostategland was80%cancerous.WithoutthePSA,there’snowayhewouldhavejustcelebratedhis 60thbirthday.Iunderstandtherearerisks,costsandmanyunknowns,butprudentPSA testingshouldcontinuetobeavailable.Youneverknowwhoselifemaybesavedbyit. Jim IhadaPSAreadingofaround4formanyyears.Thenafternotgettingtestedfora coupleyearsthenexttestshoweditwasabitover6.MyPCPthoughtthatmightbe indicatingsomething,eventhoughnothingshowedontheDRE(digitalrectalexam).Sohe sentmetoaurologist.AnotherDREshowednothingbutnowthePSAwashitting8.Soa biopsywasdone,whichshowedcancerin3of8cores. IfPSAwasnotroutinelydoneIwouldneverhaveknownaboutthiscancertill somethingshowedonaDRE,whichlikelywouldhavebeenwhenthePSAwasupover 100andpossiblynotuntilthecancerwasuntreatable. ThedeclineinProstateCancerdeathssincetheimplementationofPSAtestingis SOclearIcan’tbelieveanyrationalpersonororganizationwouldsuggestthatweno longerroutinelytestforPSA.TwoofmyfriendshavealsofoundearlyPCfromPSAtesting. Oneoftheirfathersdiedfromprostatecancer–yeshewasold,buthedidnot“diewith it”,hediedbecauseofit. Anotherfriendofminesfatherdiedmanyyearsagoof“backcancer”.Itwaswhat wewouldnotrecognizeasatypicalmetastasisforPCtotheback.Hediedbeforehewas 60yearsold. Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page149 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. Barry AlthoughthePSAtestisnotanexactindicationofcancer,itisatleastaguide towardsmakingadecisionastoidentifypotentialproblems.Forthoseofuswhoalready havecanceritisanindicatorofimprovementorthedeceasegettingworse. Charles PSAtestingisperfectlyOKifdoctorswouldlearnhowtousetheinfo.Mydoctors werealwaysreadytodosurgeryorradiation.Ichoseadifferentpath. Ibeganatreatmentprotocolofmyowndesignafterlotsofresearch.Iused BromocryptineandProscar.Thisisnotarecommendationforanyoneelsetotrythis unlesstheyfullyunderstandhowtousethesedrugs.Ifindmostdoctorsdonot.Tenyears laterIfounditnecessarytoproceedwithcurativetreatment. OncetreatmenthasbeendonePSAistheonlywaytotrackonesstatus.ThusPSA mustbecoveredatthattime. PSAisnotanindicatorofcancerandthereinlaystheproblem.Doctorsand patientsalikewanttotiePSAdirectlytoProstatecancer.Bettereducationofpatientsand doctorsalikewillgoalongwaytoimprovetreatment. Paul ThePSAtestabsolutelyidentifiedtherewasaproblemthatledtobiopsythat identifiedaGleason9cancerthatledtoradiationthatledtotriplehormonesthatledto Cryothatledtolighthormonesthathascontributedtomybeinghereafter12years.In thebeginningandallthestepsinbetweenthePSAwastheguide. Ifwehadatestthatwouldidentifyalowgradecancerthenpropersurveillance wouldbeappropriatehoweverIamunawareofanysuchtest.Thenewrecommendation suggestsitisthetestthatisatfaultforovertreatmenthoweveritiswhatisdonewiththe resultsofthetestthatmaybeinerror. Iwillcontinuetorecommendtheroutinetomychildrenandgrandchildren. Richard Itgivesmepieceofmind;mydaddiedapainful&awfuldeathfromprostate cancer!!!!Mygrandfatherhadit’aswellasmydad’sbrother,&it’sonmymother’sside too!!!!Itisoneofthevaluabletoolsindiagnosingit,&earlydetectionsavelives&money, whichinsurancecompaniesdon’tliketopayoutmoretheyabsolutelyhaveto!!!! Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page150 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. Joseph CheckingmyPSAiswhatledtomycancerdetectionin2004.MyPSAstartedrising in2007indicatedareturnofthedisease.Whatothermethodcouldtheyhaveusedto detecttheoriginalcancerandlaterthereturn?NONE.It’stheonlymethodmyoncologist hastowatchthecancerdoublingtime John IhadaPSAtestduringaroutinephysicalthatshowedelevatedPSAnumbers.This leadtoabiopsyoftheprostate.Thebiopsyshowedcancerintheprostate.IhadRobotic surgerytoremoveprostate.Uponremoval,mydoctordiscoveredthroughtestofthe prostate,thatthecancerwentuptotheborder.HadInothadthePSAtest,mycancer wouldnothavebeencaughtandcouldhaveescapedtheprostate.PSAtestisallwehave fornowanduntilwehavesomethingbettertoreplaceitwithweshouldcontinuewith whatwehave.Findareplacementnotaeliminationplease. Philip Ihadaradicalabout3years,ago.MydoctorwasalertedbyanacceleratingPSAto schedulemorefrequentappointmentsforDREsandPSAs.Anindurationinmyprostate wasfoundearlierthanotherwiseifPSAshadnotbeendone. Paul BecauseIhadaPSAover15yearsago,andthenhadseedtreatment,mylifewas saved.Iamwelltoday,activeandvolunteeringinthePCsupportarea.Iamstrong advocateofPSAforallmen.Theresultsshouldthenbeusedtomakeaneducated judgmentastowhattreatmentshouldbeundertakenorwatchfulwaiting. Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page151 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. Anonymous Iwas59years‐oldwhenIwasdiagnosedwithprostatecancer.Ilearnedthatmy PSAwas5.0andmyGleasonwas3+2or5.Ididnotknowanythingaboutprostatecancer thenandmywifeandIwereveryscared.Therewereveryfewoptionsinthosedaysfor primarytreatmentandI(andmywife)optedtohavearadical(“nerve‐sparing”) prostatectomy.Laparoscopyandroboticswerenotavailablethen.Inallofthoseyearsmy PSAhasbeen0.0to0.05andIknowIwillnotdieofprostatecancer. Ihavebeenoneoftheleadersinourlocalprostatecancersupportgroupforyears andaboardmemberofthestatewideprostatecancercoalitioninourstate.IfeelthatI haveagoodtoexcellentknowledgeofthediseasethesedays.Mysurgeryleftmeimpotent andwithurinaryproblems(difficultyinemptyingmybladder). IfIhadittoagainknowingwhatIknownow,Iwouldhaveoptedforactive surveillanceevenwiththeavailabilitytodayofbrachytherapy,cryotherapyandrobotics. IbelievethatallmenshouldhavetherighttohaveannualPSA’scoveredby insuranceiftheyfeelthatitwouldbebestforthem.Ourcoalitionistryingtoeducatethe publicinthestatewithenoughinformationtoallowforintelligentdecision‐makingfor non‐medicalpeople. Anonymous ThoughIamalive,thankfully,becauseoftreatment,IamnothappythatIwaslied tobymydoctors.Thesideeffectsofimpotenceandincontinencewereminimizedatbest bythesurgeonandotherphysicians.Surgerywaspromotedasthe“goldstandard”of treatmentoptions.Notsogoldenbymystandards;morelikeoneofthebasermetals.At theageof53,Iwasnotpreparedtogiveupmysexualfunctionortodealwithurinary incontinence. AsforthePSA,myPSAscorewas1.0,verylowandnothighenoughtoalertanyone thattheremightbeaproblem.Itwasonlythroughdigitalrectalexamandbiopsyfollow upthattheGleasonscore7cancerwasdetected. Dale Seemslikehavingabloodtestisawisething.ItwasformebecausemyPSAwas increasingfrom4to30over10years.Abiopsyrevealedcancerat74.Iwastreatedwith drugsandradiationanditdidnotaffectmysexlife.IfIwouldhavesurgeryasadvisedby somedoctors,sideeffectscouldhavebeensevere.Justbecausesomemenarepanicked intodrasticmeasures,itdoesn’tmakesensetoeliminatewhatmightbealifesavingtest forothers. Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page152 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. Judy Myhusband’sprostatecancerwasdetected14yearsagoatage45.Yes,45!!Yes, white,healthyyoungmantotallya‐symptomatic.Butbecausehisdoctor’sbrotherhad prostatecancer,thedoctorbelievesinbeginningPSAtestingat45ratherthanwaiting until50.Yes,thelastingeffectsoftreatmentshavebeenlessthanwonderful,butheis alive!!Andnewtreatmentsforprostatecanceraresurfacingmorefrequentlytogiveus moretimetogether. KeepPSAtesting,butchangethewayphysicians,especiallyurologists,rushinto treatmentsbeforeallthepossibleavenuesareexplored. James Iamadoctorandmilitaryofficerwhodiscoveredandsuccessfullytreatedfor prostatecancerbecauseofthePSA.Ihaveafamilyhistoryofprostatecancerandwas gettingserialtests.Afteraperiodofanincreaseinscoreorvelocity,eventhoughmyvalue wasstillnormalat3.1,Igotaprostatebiopsy.Thebiopsywaspositiveforcanceratjust 46.IwascommendedbythechairmanofUrologyatamajorhospitalforimpeccable monitoringandintervention.Iwastheidealcandidateforasurgicalintervention.My outcomewasperfect.Cancerwithintheorgan/gland.Fullrecoverywitherectileand urinaryfunction.WithoutthePSA,mystorycouldhavebeenverydifferent. Anonymous PSAtestinghasbeenpartofmyannualphysicalexamformanyyears.In2010, whenIwas69andinexcellenthealth,itshowedanunexplainedincreasefromlevel2, whereithadbeenconsistently,tolevel4.Thisresultedinareferraltoaurologistwho, aftertakingmyhistoryandinputtingitinhiscomputer,opinedthattherewasonlya35% chanceofthereasonbeingcancer.Hepresentedtheoptionsofwatchfulwaitingaswellas furthertests.Ioptedforaprostatebiopsywhichdisclosedthepresenceofcancerinwhat wasthoughttobeabout3%oftheglandandGleason7(3+4). Afterextensiveresearch,Ielectedsurgicalremovalthreemonthslater.Post‐ operativeexaminationofthesurroundingtissueshowednoevidenceofspread.Pathology confirmedGleason7butrevealedtheaffectedareatobe10%ofthegland. WhileIwillbemonitoredforthreeyears,Iammostlikelyclearofthecancernow.I attributethisapparentgoodfortunetoearlydetectionandpromptaction.WithoutPSA testing,thiswouldnothaveoccurred,astherewerenosymptomsindicatingthepossible presenceofcancer.Itisunknownforhowlongthecancerhadbeenpresentorhow rapidlyitwasgrowing,butwithoutsurgicalinterventionitsurelywouldhavecontinued togrowandeventuallyspreadbeyondthegland. Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page153 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. Anonymous IbelievethatPSAtestingandearlydetectionsavedmyhusband’slifeandIam countingonittodothesameformyson,sinceamanwithadirectrelativewithprostate cancerisatsignificantlyincreasedriskfordevelopingithimself.Untilwehaveabetter test,itisimportantthatdoctorscontinuetorecommendthatallmenhaveaPSAtestand thatinsurancecompaniescontinuetopayforit. Yes,therearesideeffectsfromthetreatment,butIknowthatmyhusbandand mostothermenwillinglydealwiththeminexchangefortheopportunitytohave additionalyearsoflifeandthejoythattheyderivefromsharingthesemuch‐appreciated yearswiththeonestheylove.Allofusknowsomeonewhohasbeentouchedbycancer. Althoughthereisstillmuchworktobedone,Iamthankfuleverydayfortheenormous stridesthathavebeenmadeincombattingthisrelentlessdisease.Ibelievethatitis unconscionabletodenyanyindividualthebestpossiblechancetosurviveandthatstill remainsearlydetection. Doris MyhusbandwasinaPSAtestingprogramandwasdiagnosedwithPCin1992.He hadaprostatectomyandsincethattime,hehasbeenonandoffthehormonetreatment whichhaskepthisPCundercontrol.HehasbeendealingwithPCfor19yearsandisnow 89yearsold.WithoutthatPSAscreeningprogramIfeelmyhusbandwouldnothave knownhehadPC,andwouldundoubtedlyhavediedyearsago. John MyprostatecancerwasonlydetectedbyuseofthePSA.Digitalexamandallother symptomswerenegative..TothinkI’mincapableofgettingatestresult,evaluatingthe alternatives,andmakingmyowndecisionforactionisincredible.Idonotwantanyoneto preventmyson’s(andIhavethree)fromgettingthetestingtheyneedtomaketheirown informeddecision.Thisislifechangingdecisionandshouldbemademyeachindividual withthebestinformationavailable. Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page154 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. Rick Withoutscreening,wewilllosemorethanthe33,000menpredictedtodieforthis year;withoutaPSAtest,Icouldhavebeenoneofthem. Tracy Mydadwasdiagnosedwithprostatecancerwhenhewas55yearsold.Thiswas discoveredbyafreePSAscreeninghealthfair.Hehadsurgery.Fastforwardtoage66his PSAwaselevatedthenstartedtreatment,alotofchemoandradiation,hediedattheage of68.WearethankfulforthePSAtest.Iambotheredthatthereisnotmoreofapushin prostatecancerresearch.IamthankfulforSusanKomenbutit’stimetoraisemillionsfor themeninourlives. Michael Iama57yr.oldmanwhosePSAreadings,alongwithanabnormalDRA,afterbeing watchedforawhile,hadabiopsywhichdidconfirmProstateCancer.Ichoseexternal radiationin2009,andmyprostatelevelsandDRAaregood.Ifeelthatthistool,tempered withgoodreasoningandguidance,isofvalueandshouldnotbediscarded. Anonymous ThesolutionisnottostoptheimperfectPSAtesting…itistoeducatephysicians howto1)interprettheresults2)followup/ornotdiagnosticallyinaninformedand intelligentmannerand3)respondinalike–andethical–manner. Thetestisnotonlyintrinsicallywanting;itisappliedinadiversept.population andinthecaseofconfirmedCaP,toatumorandmicroenvironmentofexceptional heterogeneityanddynamicadaptability. Still,itseemshighlyinadvisabletonotuseatoolthatsaveslivesinthehandsof intelligent,wellinformedphysicians. TheopinionofaStage4patient. Ben Myfatherwaiteduntilhehadsymptomsbeforehesawadoctor.Hewasdiagnosed withPCainJanuaryanddiedahorrible,degradingdeathinJulyatage71. Waitingforsymptomscanbesuicidal. Anonymous HadbeengettingannualPSAsfor~10years,startingaroundage54.Levelstayed flatuntillate’09andthenstartedrising.Mid’10hadbiopsywhichfound3outof12 Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page155 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. positives,noneover20%,andnospreadtootherorgans.ButIhaveaGleasonof6‐7.Took 6+monthstoanalyzeoptions,got2ndand3rdopinions(includingindependenttestsat differenthospitalanddoctor)anddecidedtotakeIMRTradiation(45treatmentsspread over9weeksendinginmid~’11). PSAdroppedby70%.Nohormonesneeded.Mostmajorsideeffect:nomore ejaculation,butsexstillenjoyable.Uncleartomeifanyofthiswasreallynecessaryas highestPSA(priortoIMRT)was7.7(butthatwasdoublefromprioryear). Atage64,however,itseemedbettertoproceednowthanlaterwhenheavierduty treatment(e.g.,surgery,hormones)mightinsteadbenecessary.ThinkPSAtestingisstill goodidea,butsuggestminimalpossibletreatmentneededtogetonwithlife,ratherthan jumpingattheso‐called“goldstandard”ofirreversiblesurgery. Pam MyhusbandwasdiagnosedwithprostatecancerinJanuaryof2011.Ifithadn’t beenforthePSAtesthiscancerwouldnothavebeendiagnosed.Hesubsequentlyhad roboticsurgeryandiscancerfree.ThePSAtestsavedhislife. Ronald Theageof65Iwentinforaroutinephysicalexaminationwhichconsistsofblood workandphysicalexamination.MyPSAnumbersatthattimewere2.9consideredinthe Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page156 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. NormalRangeformyagegroup.MydoctorsuggestedthatIhaveaultrasoundanda biopsy.ThebiopsyprovedpositiveeventhoughmyPSAnumberswereverylow.Ihad radiationandseedimplants.Iam80yearsoldandifthatwasforaroutinephysical examinationandaPSAbloodtest,Idon’tthinkIwouldbeheretoday. John ItistruethatthePSAtestdeliverstoomany‘falsepositives’and‘falsenegatives’to qualifyitforfinaldecisionmaking.But,ithasvalueasapreliminaryindicatorfor proceedingwithmoredefinitivetests.Forexample,ahighPSAbutnoothersymptoms associatedwithenlargedprostatemightbea‘falsepositive,’butifassociatedwithother symptomsshouldsignalfurthertests.Particularly,ultrascanwithbiopsies. AhistoryoflowPSAsfollowedwithasteadilyincreasingPSAnumberscouldalso beindicative.IagreethatfinalrelianceonPSAisnotareasonableposition. IhavehadtwonegativebiopsiesandtwoTURPs. Anonymous THEPSATESTSAVEDMYLIFE.At63myPSAbegantoshowarise,nevergetting above2.2.Ihadabiopsyreluctantly,andshowedpositivewithaGleasonscoreof7.I electedtohaveIGRT/IMRT. Keith IfIhadnotbeenscreenedIwouldNOThaveknownIhadaGleason8cancer…and at48,that’swaytooyoungtohavethatgradeofcancer.Iwasatbaselinefor3years beforemyPSAjumpedto8atmyannualexam.IfIhadmissedthatannualexamandnot hadmyPSAcheckedIwouldhavegoneanotheryearwithaGleason8,6corepositive cancer.AsitwasIhadsurgeryandthemarginswerepositive…so48radiationtreatments later…nowit’sgone!IamconvincedthathavingmyPSAcheckedsavedmefromhaving morecomplicationsorevendeathifitwasundetected. Dominic Iwasdiagnosedatage47withaGleason8.DespiteanRP,IMRT,Chemo&ADTmy diseaseisrecurrent.Ifitweren’tforaPSAIwouldlikelyhavebonemetsorworse.Ihave friendslikemethattoohavesimilarstoriessowithbonedisease.Untilthereisabetter indicator,IstronglybelieveinPSAtesting. Allthebesttothosefightingthisdisease.Itnotonlyimpactsmenbuttheirloved ones. Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page157 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. Anonymous MyhusbanddidnotgetaPSAbecausehisGPsaidexactlywhatthearticledid–he feltitledtounnecessaryTX.So,at65,becausehisurinestreamwassoweak,Isenthimto MD(differentone)thinkingbenignprostatichypertrophy.PSAwas60.Onemonthon antibioticanditwasupto61.Biopsyshowedcancerineverysample.Ifithadbeencaught earlier,wewouldhavehadmoreoptionsforeffectiveTX.Itseemstheproblemisn’tthe PSA.TheproblemiseducatingpractitionersontreatmentoptionsafteranelevatedPSA. Charles Iwastheposterboyforputtingoffmedicalscreening.Ihadaphysicalforan insurancepolicyatage60.ThebloodworkrevealedPSA5.1.Tenyearsprior,thePSAwas notdetectable.Duringfollow‐up,myurologistfoundacolo‐rectaltumor.Chemotherapy, EBRT,and7surgeries(includingbrachytherapy)havebroughtmetothisstage.Myfive yearsurvivalrateforstage4coloncancerwas8%. Iamnowinmy8thyearofsurvival,ingoodphysicallyactivehealthwithregular monitoring.ThePSAtestwasthefirstcriticalstepinmysuccessfulsurvival.Ishouldhave beenlookingatannualteststomonitoritsdevelopment.Ifeelthatallmenshouldhavea historyoftheirPSAlevelsuntilthereisamoreaccuratetestavailable.Treatmentfor elevatedPSAisanotherstory,andshouldbecarefullymanagedonanindividualbasis. James Iama51yearProstatecancersurvivorof3weeksnow.GoodthatIhadaPrimary caredoctorthatnoticedaspikeinmyPSA.SherefereedmetoaUrologistandIhada Biopsy.Smallamountsofcancerwerefound.BythetimeIhadmynextbiopsyayearlater myPSAhadgoneupanother1.96to4.96.Ihadsurgeryon19September2011andI’m recoveringquitewell.PSAtestingprobablysavedmyLIFE! Bruce In2008IwasdiagnosedwithmetastaticprostatecancerwithaNORMALPSA.It was3.2,upfrom2.0thepreviousyear‐Iwas51yearsoldatthetime.Nosymptomsor causeforalarmandIhavetakenyearlyphysicalssincetheageof30. WithoutaPSAtestbackthenIwouldcertainlyhavepassedawaybynowleavingayoung familyof4. Howmuchiseachlifeworth? Iwillturn55nextweekandmyoncologistisencouragedaboutmysurvivalfor another10yearsbasedonmyresponsetomycurrenttreatments,hormonetherapy, completionayearagooftheProvengeprotocolandmostcertainlythenewdrugsonthe nearhorizon. Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page158 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. Jeff Iama7yearsurvivorandIhadn’thadmyPSAtakenatmynormalannual physical,Iwouldhavediedwithintheyear.Minewasveryaggressive,butduetothe screeningIamaliveandwell.Ittriggeredtheconcerntolookfurther. Anonymous MybestfriendwentfromaPSAofnormalinoneyeartohighlyelevatedoneyear laterandsoondiedfromaveryaggressiveformofprostatecancer.Wasthepriortesta falsenegative?Idon’tknow;butifitwehadamoreaccuratetestitmayhavesavedhim.I don’tknowifthisishelpfulbutIthoughtI’dtellthestory. Edward PSAtestingsavedmylifeanddictatedfurthertestingwhichrevealedaggressive prostatecanceratage73whichwaseventuallytreatedintimewithradiation.Iamnowin remission. Dean BecausemyPSArosefrom2.5to4.0inafiveyearperiod,mydoctorreferredmeto aUrologist,whofeltIneededabiopsy.TwoweekslaterIwastoldIhadProstateCancer (Gleason7).Ataboutthesametime,mytwobrotherswerealsodiagnosedwithprostate cancer,discoveredbyariseinPSA.Thatwas8yearsagoandIamstillalive,continuingto getmyPSAcheckedonceayear.Itisstill Daniel WereitnotforPSAtesting,IwouldnothaveknownthatIhadprostatecancer.This informationledmetosupportgroupsMalecare,fromwhoseleadersandothermembersI learnedwhattreatmentswereavailableandrecommended,andwasdirectedtothe appropriateinstitutionsandphysiciansforcare.Iwouldlikelynotbealivetodaywereit notforthePSAtest. Untilabettermethodisavailable,thesimplyperformedPSAtestformenin middle‐ageisvitaltotheirhealthandwell‐being,andhasthepotential,likethe mammogram,tosavelives.Over‐reactiontoapositivefindingisregrettableandmore oftenthannotunnecessary,andeasilyenoughavoidedbycontactingthesededicated supportgroups.Knowledgeispower. Ignorance,inmattersofhealth,isnotbliss. Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page159 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. John MyprostatecancerneverdidrevealitselftoaDRE;itwasonlyamonitoringofmy PSAatregularintervalsthatresultedinmyhavingabiopsyandadiagnosisofalready advancePCaatage55in2006. Asaresultofcatchingitwhenwedid,Iamstillaliveandstillreasonablyfunctional goingonsixyearslater. WouldIbeeitherofthoseifwehadn’tcaughtitwhenwedid?Itishardtoprove onewayortheother,butIcan’timagineI’dhavefeltanddonebetterifwe’dwaiteduntil itbegancausingbonepainbeforewe’ddiscoveredit.AtleastforawhileIcouldenjoythe hopeofgettingcured.Onceitwasinthebones,itwasclearlynotcurable.Thatwouldhave beenaterribleshock. Thetreatmentsforprostatecancerarenopicnicinthepark;theyhavetakenatoll onme.Butastreatmentsimproveitwillmakemoreandmoresensetocatchandtreat prostatecancerearlierratherthanlater.Ican’timagineacircumstancewherelivingin ignoranceabouthavingthediseaseisbetterthanknowingaboutit. David ThePSAtest,requestedbymyGeneralPractitioner,endedmyspecialists4year beliefthatIhadprostatitis,whichhewastreatingwithantibiotics,whileIsuffered. Iunderwentsuccessfulradiationtherapy12yearsago. Norman PSAtestinghelpedmefindcancerearlyandItrackeditforyearsuntilitspiked. WithoutthetestIwouldnothaveknownIwasindanger.ThankyouforPSA.Itmaynot beperfectbutneitheraremammograms.Whytakeawaytheonlyearlywarningtoolwe havetoday. Dan InFebruaryof2003,myPSAdoubledfromtheprevioustesttwoyearsprior.My urologistcouldfindnoirregularityinmyDRIandIhadnoothersymptoms.Wedecidedto doabiopsy–12of12corestestedpositiveforcancer(fortunatelyGleason6)!Iwas treatedwithradiationandbrachytherapyinthefallof2003andtodaymyPSAin undetectable. IfeelthatthePSAtestSAVEDMYLIFE! Turk InFebruaryof2003,myPSAdoubledfromtheprevioustesttwoyearsprior.My urologistcouldfindnoirregularityinmyDRIandIhadnoothersymptoms.Wedecidedto Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page160 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. doabiopsy–12of12corestestedpositiveforcancer(fortunatelyGleason6)!Iwas treatedwithradiationandbrachytherapyinthefallof2003andtodaymyPSAin undetectable. IfeelthatthePSAtestSAVEDMYLIFE! Anonymous Diagnosedat47bymyGeneralPractitionerwhoincorporatesPSAtestingforall hispatientsover40.Myincreasewasonly1.5overthepreviousyearbutmyDr.was cautiousandreferredmetoaurologistwhothendidabiopsy.Hadroboticprostatectomy andnowIamcancerfree.WouldneverhavethoughttoaskforaPSAtestonmyown.It’s crazynottotestunder50–itprobablysavedmylife. John Iwasdiagnosedin2004attheageof5withaGleason7andPSAof4.1.Atthat diagnosismyurologisttoldmethatwithoutthePSA,Iwouldhavewaiteduntilsymptoms appeared.ThatmeantIwouldnothaveseenhimforanotherdecadeandthenitwould havebeenamatteroftryingtoseehowmuchlongerthemedicalestablishmentcould keepmealive. Ihadaradicalprostatectomyin2004.Sevenyearslater,myPSAis0.6andIhave decadesoflifetolookforwardto. David PSATestingisavitaltoolwhichmustbemaintainedinthefightagainstprostate cancer.Iforoneambeingtreatedutilizing“ActiveSurveillance”.ItisimperativethatI receivePSAtestingaswellasdigitalexaminationstomonitortheactivityofmyprostate. ThePSAisatoolwhichhasguidedmeninanefforttosavelives.Earlydetectionusing PSAanddigitaltestingisthefrontlineintreatmentandmustbecontinueduntilabetter provenmethodofmonitoringtheprostateactivityisdeveloped. Mary WhenmyhusbandfinallyhadaPSAtestforPCa,itwasafterhavingtwoyoung docswhosaidhisDREwasfinesononeedtohaveaPSA,andhisPSAwas61. IfwehadwaitedmuchlongerhewouldprobablynotbeaPCasurvivortodayfiveyears posttreatment.SomuchforDRE’sbeingallthatareneeded. Iamthankfulformyhusbandbeingherewithmetodayandthedocwhothought attheageof65heNEEDEDaPSA. Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page161 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. Douglas MyPSAwascheckedregularly.OneyearmyDoctornotedachangeandsentmefor abiopsy.Surgicalremovaloftheprostatefollowedwithtwomonths.Thecancerhadjust startedtoescapetheprostatebutwascompletelykilledbysubsequentradiation.Thereis nodoubtinmymindthattheregularPSAtestsincreasedmylifespanandqualityoflife. Asaresultofmyexperience,mybrother’sprostatecancerwasdetectedandisbeing treated.TheideathatmenshouldnothavePSAtestsisludicrous! Fred Iwas51yearsoldwithNOsymptomswhenthecombinationofPSAtestanddigital rectalexamdetectedatumor.Ihavebeencancer‐freefor12yearsandIbelievethatthe PSAtestmighthavesavedmylife. Victoria Iamthewifeofaprostatecancersurvivorwhowastreatedin2003afteraseries ofroutinePSAscreeningswhichindicatedrapidPSAvelocityabiopsyestablishedcancer, wellaheadofmetastasis.Hewastreatedwithbrachytherapyandhormoneablationand is,tothisday,cancerfree. Recently,ataconference,Imetamanandwifewhosestoryistheexactoppositeof ours. ThismanneverhadaPSA,buthadsomedifficultyurinating,sobookedan appointmentwithaurologist.Thedoctordidarectalexamandfoundcancerwhichhad metastasizedtoadangerousdegree–themanhadaGleasonof,Ibelieve,8. Oururologisttellsusthat,inthebygonedaysbeforetherewasPSAscreening,that’show prostatecancer–thedangerouskind–wasalmostalwaysfound,viatheDRE,andbythenit wasoftentoolate. SomehowthemanImethaslived,goingfromradiationtochemotopalliative treatments,whichheiscurrentlyon.Hemethiswifethedayafterdiagnosis. Theyknowthat,althoughthesetenyearshavebeenablessing,heis,inessence,undera deathsentence.Iheardthemsaytheotherday,“Inournextlife,wejusthopewemeet earlier…”Theyarebravepeople:whoevercomesnextinthisfightagainstcancerdeserves theheads‐upthatPSAscreeningaffords. Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page162 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. Ken In2008Iwasdiagnosedwithprostatecancer.Luckily,mydoctorbelievedinPSA testinganditwaspartofmycheck‐up.IfhedidnotscreenforPSA,Imaynotbehere today.TwocoreswerecancerousandIhadmyprostateremoved4monthslater.Ithad notspreadtothemarginsandIconsidermyselflucky.Threeyearslater…fastforward.I continuetogettestsandallhavebeennegative.Idon’tevenwanttoimaginewhatmay havehappenedhadInotbeentested. Anonymous In2006attheageof55,IhadnosymptomsbutarisingPSAscore.Mydoctor orderedabiopsyandtheresultsshowed11outof20sampleswerepositiveforprostate cancer.Ididmyresearchtalkingtodoctorsandpatients,andIreadseveralbooksand visitedmanyinternetwebsites.Iwasagoodcandidateforsurgeryorforradiation therapy.Iconsideredactivesurveillanceforabout5minutes.Allofmytestsshowedthat waitingwasn’tanoption.MydoctortoldmeIcoulddonothingandwouldthenhave serioushealthproblems,possiblydeathin5‐7years.Iamaliveandcancerfree5years laterthankstothePSAtest. 1outof6menwillgetprostatecancer.5outof6won’t.Theproblemis,howelse wouldyouknowifyouarelikeme,theunluckyoneofthesix?Whywaitforsymptoms thattellyouit’stoolatetogetridofthecancerorthatyouwillhavedifficultandpainful timesaheadlivingwiththecancer? Anonymous IdidnotgetmyPSAtestedfromage42to54.WhenIwastestedandsubsequently biopsied,Ihadstage3prostatecancer.IbelieveifIhadgottentestedmoreregularlyI couldhavestoppedthediseaseinstage1.Iamnowsubjecttotakingseriouslybad medicinemaybefortherestofmylife.Ialsospentasmallfortuneonradiationandmeds. IfIhadnotevergottenPSAtestsIbelieveIwouldsoonbeinstage4anddeadin5years. Asimplebloodtest10yearsagowouldhavesavedmealotofgriefandmaybeextended mylife.Nottomentionmywallet. Anonymous Mygreatgrandfatherdiedatage92ofprostatecancer.Hehadsurgeryinhis80's. Myfatherhadextracapsularadvancestageprostatecanceratage79.Hetreatedwith externalbeamradiation.Thatsaidhecontinuestohaveaftereffectsandhashadto undergoanti‐androgentherapytomaintainreasonablecontrolnumbers. Iwasthereforenotsurprisedatage54tohavebeendiagnosedwithPCA,dueto theyearoveryearincreaseinmyPSA.Thebiopsywasayearagothispastweekandwas Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page163 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. positivebutshowedonlylimitedcancer.IhadsurgeryinJanuaryofthisyear(2011).The pathologyreportfollowingthesurgerymovedmystagetoT2findingthatthetumorwas onbothsidesofmyprostate,andconsiderablylargerthananticipatedbythebiopsy. WhileIamstilldealingwithissuesrelatedtoimpotence,Irecoveredcontinence withinsixweeksofthesurgery. Allthingsconsideredandwithmyfamilyhistory,IhavetobelievethatthePSAtest savedmylifeandallowedmetoavoidtheclearfatethatawaitedmeinthefuture. TheresultsofthePSAtestworkedforme.MaybeIaminthesmallgroupwhobenefited fromthePSAtest.Itallowedmetobetreatedatanagewhentreatmentwasbothpractical andeffective. Richard WithoutPSAIwouldnothaveknownIhadCancer.IhadaPSAtestforthefirst timein2001itwasa8andledmyDR.todoaDREandhefoundnodulesandsentmetoa urologist. ItestedpositiveforaggressivecancerandhadCRYOin2002.Iamstillcancerfree 9yearslater.PSAisnottheonlytesttogobybutitisastartandsavedmylife. Paul IstronglysupporttheearlyandcontinuingPSAtestingformenoverage40and evenearlierwithahistoryofprostatecancerintheirimmediatefamily.IdidnotstartPSA testinguntilaboutage50duringwhichtimeIhadBPH.ThePSAlevelwasmoderateand relativelyconstantfor6years(aged56‐62).HoweverfromFeb08toJun08,aperiodof4 monthsthePSAjumpedfrom2.67to3.99(anincreaseof1.32pointsor49%), precipitatingabiopsywhichconfirmedprostatecancer(atGleason4+3=7).AnotherPSA inSep08revealedaPSAof6.07(anfurtherincreaseof2.01or50%within3months). Ididnottaketheresultslightly,suspectingIhadanaggressiveformofprostate cancer.Iwassubsequentlytreatedwithprotonbeamtherapy.Ihavehadnosignificant sideeffectsandmycurrentPSAafter2.5yearsis1.01,whichIamcontinuingtomonitor.I don’tknowofthepotentialforrecurrence,butIliveforeachdayandamthankfulforthe opportunity. Steven At47yearsold,IneverconsideredthethoughtofProstateCancer.While undergoingtreatmentforaurinarytractinfection,IhadaPSAtestdonewhichwas understandablyhigh.SinceIalsohadtroubleemptyingmybladderandfrequentlygotup atnight,IgaveinanddeterminedtohaveanotherPSAtestdoneseveralmonthsafterthe infectionwasgone.Itcamebackat8.7. Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page164 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. IfIhadnotdonethis,Iwouldhavelikelylivedwiththeinconveniencesofthe symptomsbutnotfollowedupwithtesting.Imightalsobedeadbynow!PSAtesting savedmylife;there’snowayaroundthatfact. David Iam59.IhavebeenslowlywatchingmyPSAclimbforthepast10years.2years agoitwas8.7,andmyGPreferredmetoaUrologist.Ihadnosymptomsatall.Ifeltfine.I failedtorealizetheimplications,ortheimportanceofwhatwashappeningtomybody.I nevergotaroundtomakingthatappointment. LastNovember,IhadanissuewhichrequiredavisittomyGP.Itwasnotrelatedto mysoon‐to‐be‐discoveredPC;however,itdidstartachainreactionofsubsequenttests. ThebloodtestrevealedaPSAof64.Needlesstosay,IgotthecallfrommyGP.Sheasked whetherIhadseentheurologist18monthsago(atthetime).Isaidno,Inevergotaround toit.Well,youMUSTgoimmediately!Sheremarked. Firstcametheultrasound,thentheCTscan,thenthebiopsy,andthen……..”I’m afraidtosaythatyouhavePC”fromtheurologist.Priortohisconfirmationofmydisease, hewassayingthathewouldoperate(theoldfashionedopensurgeryway).Followingthe biopsy,Ihadabonescan,thenanMRI. Thebonescanwasclear;TheMRIrevealedthatthecancerhadbeguntospread fromoneside.ThisurologistthendecidedNOTtooperate.Hewasafraidtofindthatit hadspreadbeyondhisabilitytooperatesuccessfully.Hispreferredoptionwasthenfor nuclear/hormonetreatment.Thisrevelationpretty‐muchshatteredme,tosaytheleast. Afterall,Iambullet‐proof!Thismustbesomekindofcrueljoke…surely!My obviouscollapseofcomposureinhisroomsledhimtoofferreferralstoasmanyother doctorsandoncologistsasIneededtohelpcometotermswithwhatIshoulddoaboutit. Isawtwoothersurgeonsandoneoncologist.Theyallagreedthatitwasoperable.So,I choseonewhohadthemostscalpsonhisbelt,andhadmykeyholelaparoscopicradicle prostatectomyperformedinAprilofthisyear(6monthsagotoday!). After2PSAtestssince,myscoreis0.Continenceisalmostnormalagain.Working ontherehabissuestodowithEDisongoing.Togothroughthischapteronone’sownisa hugeloadtobearalso.Butforthesupportofsomereallygoodfriends,andmyson,I wouldhavestruggledmuchmorethanIhave. ThegoodthingaboutallofthisisthatbecauseofPSAtesting,Iwillhavealifewithoutthe traumaofametastasizedcancer.Lifeisdifferent…yes.Itcanstillbegoodthough. Lars Iwasdiagnosed1995withPSA58,Gleason9and60gramgland.6monthsto live!!!WetreatedwithLupronandwhenPSAwasdowntoaboutIhadradicalsurgery. ContinuedLupronandaddedCasodexadded.Then,radiationoftheprostatebed.Hadthe Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page165 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. bestradiologistandagainPSAdowntobelowdetectableforaboutfiveyears.HowcouldI havebeenabletomonitormyPCwithoutPSAtests? David Diagnosedin2004withahighlyaggressive,locallyadvancedPCa,Ihave completedabout3yearsofADT,withnoreturnoftestosteroneafterstoppingADT3 yearsago,andunderwentafullprogramofradiationtherapy. ThesideeffectsofthehormonedeprivationtherapyhavebeenDraconianandhave significantlydamagedvirtuallyeveryaspectofmyqualityoflife.Otheradverseside effectsresultedfromtheradiationtherapy.Atthetimeofmydiagnosis,littlewasknown aboutpossibleADTsyndrome,soIcouldhavenothavepossiblymadeanintelligent choice. IamahealthcareproviderinpediatricssoIhadnotreviewedadultinternal medicineinmanyyearsatthetimeofmydiagnosis.Onbalance,now,Iconcurwiththe USPSTFrecommendations. Attheveryleast,asymptomaticmenshouldcarefullyconsiderwhethertheycan dealwiththelikelyconsequencesofgettingascreeningPSA.Wemustfinallyadmitthat scantevidenceexiststhat,evenforrelativelyaggressivecancers,testingandtreatment willlikelyhaveminimaleffectonoverallmortalitybutarevirtuallyguaranteedtoresult inadverseeffectsonapatient’slife. Thisviewwouldchangeif,in5‐10years,wehavemustmoreeffectiveandsafe targetedtherapies,immunotherapies,orotheroptions,butfornow,mostmenshouldnot beencouragedtogetPSAscreening.Ourreachhasexceededourgrasp,andwehaveacted withmorezealthanwisdom.It’stimetostepbackandseriouslyconsiderthewisdomof routinescreening. Rich AbovenormalPSAreadingsontwoseparatetestsledmetoabiopsywhich revealedprostatecancer.Withoutthisinformation,Iwouldnothavebeenabletobenefit fromearlydetectionandtreatment. Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page166 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. Havingmenscreenedforprostatecancerisagoodideathatissharedbymedical professionalsforotherdiseases.Peoplewithheartconditionshavestresstestsand cholesterolscreenings.Womenhavemammogramstotestforbreastcancer. TherealissueisformentofollowtheirPSAovertimeandtostayintouchwith theirdoctor(s)iftherearechanges,especiallyaconsistentmoveupward.Thoseofusin theprostatecancerawarenesscommunityadvocateaholisticviewaboutdetectionand treatmentofprostatecancer. Onepieceofdataintime(asinglePSAreading)isnotenoughtopaintapictureof prostatehealth.ItneedstobeaccompaniedbyaDRE(digitalrectalexam)and consultationwithadoctor.AvoidingPSAscreeningsaltogetherinthenameofmen’s healthisreallyaPSA–positivelysillyapproach. Anonymous Sincemy40’s,mydoctorshavedoneanannualPSAcheck.Threeyearsagothis baselinebecamevaluable(Iwas61then).MyPSAstartedtorisewithnoindicationofan enlargedprostrate.Afteracoupleofannualtreatmentswithantibioticthatreducedmy PSA.MyPSAjumpedtoa6soa12samplebiopsywasperformed.Nofindings,butayear laterPSAwenttoa9.Asaturationbiopsywasperformedwithonepositiverated6.Inow havehad43radiationtreatments. WithoutthePSAbaselinethecancercouldeasilybeoutofmyprostrateinto untreatableareas. AneighborneverhadaPSA.Bythetimeitwasdiscoveredthathehadprostate cancer,itwasinhisbonemarrow,sonowheisdyingwithuntreatablecancer. IhavetoldmybrothersthattheyneedtohavePSAandColonoscopydoneasprescribed. Cancercansuckthelifeoutofyouquickly. Kurt Iwentintodoacolonoscopybecausemyfatherhadcoloncancerat50.Thiswas my3rdone.WhenIawoketheDoctortoldmemycolonwasfinebutIhadProstateCancer atage50.IdidnotknowwhataPSAtestwasbuttheDoctorhaddoneonewiththeColon test.6monthslatermyprostratewasremovedrobotically.TodayI’mcancerfreewithno sideeffects. Rick ThePSAtestsavedmylife.At47yearsoldIhadnosymptomsandnofamily history.MyPSAcameback11.1.TheDREfoundnothing. I’mhealthandlivingaftersuccessfulsurgerywitha0.0PSAthreeyearslater. WithoutthePSAtestIwouldbeonmywaytobeingdead.Itisjustthatsimple. Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page167 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. Anonymous MygrandfatherandfatherhadPCandIbeganPSAtestingin1990.Thenumber roseyearly.InMar2004itwas3.2andinOctitwas5.7.Ihadabiopsywhichindicated cancerwithaGleasonof3+3.IhadaRPdoneinJan2005.ThepostGleasonwasstill3+3 butthepathologistindicatedthatthecancerhadspreadtotheouterextremityofthe prostatebutdidnotbreakthrough.IFIDIDN’THAVEAPSAEXAMITWOULDHAVE SPREADANDIWOULD’NTBEWRITINGTHISMESSAGE. PSAtestingistheonlyadequatemethodtodeterminePC,butontestwillnotgivea definiteindication. Thetestingmustbedoneoveraperiodoftimetodetermineifitwasaflukeora treaddevelopinwhichcasefurthertestingwouldbenecessary.TheGleasontestwould beagoodindicatorofthegrowthandlocationofthePC. Itisimpossibletoahaveastudytocorrectlystatetheresultsingeneralterms.Eachcase ofProstateCancermustbediagnosedandtreatedindividually. Sue EverytimeProstateCancerisinthenews,itisreinforcedthatitisslowgrowing, notlikelytokillyou,canbewatched,etc.,etc.,etc.Itangersmeandsickensmeeverytime. Myhusband,wasdiagnosedwithProstateCancerat52yearsofage,andwasdeadat53 afteritspreadtolymphnodes,bones(entireskeleton),brainandliver,encroachingonhis spinalcordandparalyzinghim. HisProstateCancerwasnotslowgrowing,itwasextremelyaggressive.Ittook downavibranthardworkingfarmerintheprimeofhislife.Weweretoldhe’dhave15 yearseasily,andatleast5yearsbeforeanychemoorradiationwouldevenneedtobe considered,buthehad17months. ProstateCancerDOESkill,andwhenitisaggressiveitkillsyoungandmiddleaged menwithfamiliesandcareers,notjustlongagoretiredmeninthetwilightoftheirlives who‘maybekilledbysomethingelselongbeforeProstateCancerwillkillthem’asisso oftentouted.Heleftbehindasonincollege,adaughterjustoutonherownandstarting hercareer,a14montholdgranddaughter,andhewasthesoledrivingforcebehindthe familyfarmthathisfatherstartedfromnothing–nottomentionmyself,hiswifeofover 28yearsstillinshockandleftholdingthebag. Myhusbandwasonlydiagnosedbyaccident,hisdoctordid‘routine’bloodwork duetohishavingsomeflulikesymptomsoff&onforabout6weeks.TherewerenoPC symptoms. WhenthedoctorcalledourhousethedayafterThanksgivingtoreportthefindings ourliveswereturnedupsidedownnevertoreturn,buthadthePSAtestnotbeendone, whoknowshowlongitwouldhavetakentobediscovered,andwouldtheprimarycancer haveeverbeendetermined?Wouldhehavebeenabletolivelongenoughtoknowhis onlygrandchildbornjustmonthsafterhisinitialdiagnosis? Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page168 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. MaybethePSAtestwill‘only’save1manoutofthousandstested.SOWHAT??!! Eachandeverylifelostispreciousandmeaningfulandnottobediscounted.Thetestis simpleandnotexpensivesowhatistheharmintryingtopreventthehorrorthatour family,andcountlessothers,havehadtoendurewhenperhapsitcouldhavebeen different? Bill Iwasinmymid40’sandchangedfamilydoctors.ImentionedmyFatherhad prostatecancer(diagnosedinismid80's)andthenewdoctorsaidIshouldhaveaPSA everyyear.Inmyearly50's,myPSAhadaprettygoodjumpeventhoughitwasrelatively low.Wedidaneedlebiopsyanditcamebackwithalotofprettyaggressivecancer.Ihad theprostateoutin2000tumorwas“tothemargin”.Aboutayearandahalflater,PSA startedshootingupagainsowedidradiationandthenontohormonedeprivation.Idid chemolastyear.ItlookslikeitisheretostaysincemyPSAisontheriseagain.Iwasin Vietnamforayearandmycancerhasprettymuchfollowedrightdownthelinewhatthe VAsayswhathappenswithAgentOrangerelatedprostatecancer. Inmyopinion,ifIwasnotgettingayearlyPSAtest,Iwouldnotbewritingthis today. Gary Whileapplyingforaninsurancepolicy,IwasrequiredtohaveaPSAtest.Iwas65 andhadneverbeentestedbeforeandmyresultswere105.MyUrologistimmediately startedmeonADT;30dayslaterhadaRRP.Thepathologyreturneda4+5=9Gleason score,stagingofpT3b,NO,MX.Thecancerhadalreadyescapedthecapsuleandwasinthe seminalvesicles.Twomonthsaftersurgery,IhadIMRT,40treatmentsandstayedonADT for2yearsbeforeIwasabletostopthattreatment.OnlybyPSAtestingdidIfindthatI requiredfurthertesting(Biopsy)whichresultedwithfollow‐uptreatments. Tri‐monthlyPSAtestingafterradiationdeterminedwhentoendADT,andthePC hasbeeninremissionnowfor2years.WithoutmonitoringPSA(whichthelevelisnow startingtocreepup)Iwouldnotknowwhentorenewmytreatmentsinordertosustain life.Withouttheoriginaltesting,andwithnocausetoinvestigatefurther,thereisno doubt;Iwouldbeinafinalstageofcanceratthistime.PSAandDREexamsaretheonly inexpensivetoolsmenhaveavailable.WeshouldbePROMOTINGtheirexistenceloudly. Chris IwasdiagnosedwithProstateCancerin2001becausemyprimarycarephysician recognizedthatmyPSAwasabovethethresholdstandard(4.0).Atage52,mywifeandI appreciatedthatwehadtheoptionoftreatmentorwatchfulwaitingatthattime.Theway wesawitthenisthatitisthepatient’schoiceandthatthepatientshouldhavethe Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page169 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. informationabouthishealthstatus.Ifwedidnothavetheinformationaboutthegrowing cancerthatthePSAalertedusto,thenatwhatpointwouldweknow? Tenyearslatermyprimarycarephysicianwouldbeusingthedigitalrectalexam duringmyannualphysicaltofindalump. Personally,asthepatient,IwouldprefertohavetheoptiontointerveneSOONERthan whenthePCPfindsalumpbecauseearliertreatmentcanmakeadifference.Fortunately, myPSAremainsatlessthan0.01todayandIcontinuetousethePSAtestevery6months. Iamactivelyinvolvedinmanagingthediseasethroughexercise,dietand meditationandusethePSAtomonitorforanychange.Irecognizethatitisnotaperfect toolbutuntilabettertoolbecomesavailableIthinkphysiciansshouldletthepatient decideaboutusingthePSAandtheyshouldnotmakethechoiceforthepatient. George Iam64yearsold.IhadbeenhavingannualPSAtestsdonebymyPCPforatleast tenyearsbeforeitwentover4.0inearly2009.Ithadjumpedfrom2.8to4.1inayear,and mydoctorsuggestedthatIseeaurologist,althoughshefeltthatthelikelihoodofPCawas low.Theurologistperformedabiopsy,andinMayof2009IwastoldthatIdidhavePCain fouroffourteentestedsites,withaGleasonof3+3. AfterdoingaLOTofresearch,IdecidedtotreatmyPCawithexternalbeam radiation(IMRT);Iwasnotagoodcandidateforseedimplantation,andIknowtoomany menwhohavehadcomplicationsfollowingsurgery. AlmosttwoyearslatermyPSAremainsunder1.0,andIhaveittestedeverythree monthsbymyurologist.IfIhadn’tbeenhavingannualPSAtesting,myPCawouldn’thave beencaughtatsuchanearlystage,andmyprognosismightnothavebeenasgoodasitis. Barry WithoutPSAorareplacementtestitwillbeadisastertobeinthatsetofmenwith risingPSAandaggressiveprostatecancer.Personally,becauseoftheoldguidelinesthe bloodtestresultswasmyfirstindicationofveryaggressivecancer.CurrentlyIamquite hopefulofkeepingmyaggressivecanceratbaywithtreatment.Withoutthebloodtest menwithsimilarlyaggressivecancerandrisingPSAwillhavenowaytoknowthe jeopardytheyarein.Howwilltheyknowwhentocomeinfortreatment?Donotleavemy sonsontheouts. Anonymous WhenyouarefirstdiagnosedwithstageIVPCyouwonderhowlongyouwilllive.I withdrew,criedallthetime,andcouldn’ttalktomywife,myfamily,andmyfriends.My wifewasandismyadvocate…..PSAscreeningcansavelives.Icannotbelieveitwouldbe Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page170 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. onthechoppingblock.Especiallyfromdoctors.PCcutslivesshortasitis…..don’ttakethe onlytoolwehaveaway,please. David Iwasdiagnosed3yearsagoatage56andonlybecauseroutinePSAtesting showedanincreasefrom2.6to3.8in1year.MybiopsyrevealedadangerousGleason scoreof9(5+4).3yearsaftersurgerymyPSAis0.02.OnlyroutinePSAtestingrevealed thisaggressivecancerbeforeitcouldspread. Anonymous MyPSAwentfrom10to20inoneyear.Abiopsyshowedtreatableprostatecancer. IdonotthinkthatIwouldhaveknownthiswithoutthePSAtesting. Whatisthealternativeasinmycasetherewasnosymptoms. Bruce Helloandletmesayfirstandforemost,“ThankGodforPSAtesting.” Nowmystory,Iwashavingdifficultyafterdoingshortburstsofanyunrelatedworktasks aroundthehouse.Iwasaround70or71atthetimeandmyPSAreadingswerebetween high2’sandlow3’s.IhadexaminationsandfoundIneededheartsurgeryinvolving stents. Aftercompletingthisandseeminglyonahealthyroadtorecoveryitwas discoveredthroughregularPSAtestingthatmyreadingsweregettinghigher(low4’sand low5’s)OfcourseIwasindenial.Myprimaryphysiciansentmetoaurologistalongwith mymostrecentreading,5.2orsomethinglikethat.Myurologistwantedtodoabiopsy immediatelybutduetomyrecentheartstentimplantsandbeingonPlavixandhaving diabetes,itwasdeterminedtobetoosooninordertoguardagainstanyinternalbleeding thatmightoccur. Afterafewmonths,IhadthebiopsyandIdidhaveprostatecancerassuspectedby myurologist.Ihadthecryotherapytreatmentandamnowlivinganalmostnormallife. YesIammostlyimpotentbutthatisminorconsideringIcouldbedeadorsufferingvery badlynow.Iamnow75andveryfewpeoplecantellunlessIinformthemofthatfact. Anonymous PSAtestingsavedmefrommuchpainandtreatment.IhadmyPSAtestedannually foranumberofyearsandwhenitdoubledafterayear,myprimarycarewantedit checkedagainwithin6months.Atthattest,ithadnearlydoubledagainsoIhadabiopsy doneandPCwasfoundin3coresbutnotoutsideoftheglanditself.Therefore,aftermuch homeworkandmanydiscussionswithPCsurvivors,EBDandtheimplantingofseedswas Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page171 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. thetherapyIchose.MyPSAiscurrentlyunder.02andhasbeenforawhile,now.Have experiencedsomeside/aftereffectsthathavechangedmylifestylealittle.However, withoutthePSAtesting,Iwouldprobablynotevenbewritingthis.Averyminor procedurethatcansavepeople’sliveswouldseemtobesomethingthatshouldbe availableforanyonewhowantsit. ThesefoolsthatwanttoeliminatethePSAtestonmendon’tseemtohaveany conceptofwhattherealworldisactuallyallabout.Iwonderhowmanyofthemhave actuallyexperiencedanyreal‐lifesituationsinvolvingprostatecancer(oranyother cancer,forthatmatter.). Anonymous MypartnerandIhadbeendatingoneyearwhenhewasdiagnosed.Hehadrobotic surgeryandwewerepromisedeverythingwouldbejustfine.Yes,thecancerisgone,but soarehiserectionsandhisabilitytoholdurine.Prostatecancerhasemasculatedhim.It wasveryhardonourrelationship.Becausesincehecouldn’tgetanerection,hestopped wantingsex.Wehadtoworkonthatforalongtime.Prostatecancertookmostoftheman outofmyman. Harold MybrotherisoneyearolderthanmeandcalledtoinformmeafterhisPSAwas donethathehadPC.Hewas58atthetime.WiththatstunninginformationIranmyPSA andwasmuchworsethanhim.SinceIhavesurgeryandradiationandhormoneoblation. MyDr.wasn’ttestingPSAandifitweren’tformybrothers’testIwouldbedeceasedby now.Tosaythistestisn’teffectiveiswrong.Therealproblemismistreatmentandover treatmentbyamedicalestablishmentthatknowslittleabouttheappropriateprotocol Mare MyhusbanddiedthispastDecofAdvancedProstateCancer,hisageafewmonths past58,hewasdiagnosedat51theendof2003onlybecauseIforcedhimtogeta checkupbecauseweweremovingtoAlaskaintheBush.HisPSAwas15whenhediedhis PSAwas784.Hehadradicalprostatectomy,non‐nervesparing,alifewithoutsex,buta lifeforanother7years.Hewasintwotrialstudies,hadthebestdoctors.Ifhehadgone soonerforacheckup,perhapshewouldbeheretoday.I’manadvocateforearlytesting…I missmyhusbandverymuch. Gary InaroutinePSAtestsixyearsagowhenIwas63,followedbyabiopsy,Iwas diagnosedwithprostatecancer.MywifeandIweremorethanalittleworried.Icontacted Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page172 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. severalcentersforsurgery,andinvestigatedotheroptions…finallysettlingonrobotic prostatectomy.Thesurgerywassuccessful,negativemargins.Iwentthroughseveral monthsoftherapyforincontinenceandaboutthreeyearsofEDtreatment.Allispretty much“normal”now,exceptfornothavingejaculations. Ireallydon’tknowhowaggressivemycancerwas,butlivingwithitwould probablyhavebeenverystressful.Ithinkwearebothveryrelievedthecancerwas detectedandremoved.ContinuedPSAtestsarenegative.Hoorayforthat!! Lynn PSAtestingsavedmylife.AroutineinsurancephysicaldetectedahighPSA.Avisit toaurologistfollowed.Abiopsywasdoneandafastgrowingcancerwasfound.Robotic surgerywasdoneandtheprostateglandwasremoved.OverfouryearslaterIamstill aroundbeingthebesthusbandandfatherIcanbe. Jeff Whenmydaddiedofcancer,thepostmortemrevealedthathislungs,liverand prostatewereheavilyinvolvedwithcancergrowths.Althoughprostatecancerusually progressestothebones,thereisnomentionofbonecancerinthewrite‐up,butthis occurredaround20yearsago,andIdon’tknowiftheywereevenlookingforthat. Itisquitelikelythatthecancerbeganwiththeprostateandmetastasizedtothe otherorgans.So,whenmyPSAnumbersbegantoincrease,Istartedhavingbiopsies.They werenegativeuntilallofasudden,atasixmonthinterval,theyweren’t,andshoweda Gleasonscoreofbetween6or7.Mybrotherisnineyearsyounger,andhisproctologist keepscheckinghimregularly. Howelsewillheknowwhetherhisprostateglandbeginstogocancerous?The speedwithwhichminedevelopedwasalarming,andI’msurethattheseedimplantsplus radiationplushormonetreatmentsIreceivedhavesavedmylife.BlockingregularPSA testingisirrationalandisameasureofthenegativeimpactthattheinsurancecompanies aretryingtoexertonourlivestoourowndetriment. Steve Iwasdiagnosedwithprostatecanceratage53.Bythetimeitwasdiscoveredbya digitalexam,ithasspreadbeyondtheprostate.HadIfollowedtheguidelineoftestingPSA atage50,Imightnotstillbedealingwiththecancerbecausethetreatmentsmighthave putitintoremission. Therewasnoprostatecancerinmyfamilyhistory,whichsomewouldsayisa reasonnottohaveaPSAtest.Myopinionisthattheyarewrong!” Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page173 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. Bill WhenIretiredfromtheAirForce,theVAHospitalperformedaPSAtest;the resultswerealittlehighformyageof39.WhenIsawaAFdoctoronmyexitphysical,he saiditwasnotanissue.At40,Ihadsomeotherhealthissues;Irequestedacomplete physicaltoincludeaPSA(Iaskedforit).Itcamebackhigherthanpervious,8.9.Iwassent toaspecialist,tookmedicationsfor30daystoseeifitwasininfection.PSAwasat9.0 afterwards.Afterabiopsy,itwascancer.Ielectedfortheremovaloftheprostate,which happenedtwomonthslaterandthecancerhadbrokentheouterbarrieroftheprostate.If notforthePSAtest,thecancerwouldhavegoneundetecteduntilitwastoolate.Ihadno otherindicatorsthattherewereanyproblems.ItwasalsobecauseofPSAtestingthatfive yearslaterthecancerwascaughtinitsearlystage. IamafirmbelieverinthePSAtestingandrecommendthatmengetitperformed earlytostartabaseline. Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page174 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. Tim MyfamilyphysicianstartedPSAtestingwhenIwas40,aspartoftypicalblood workformybloodpressureprescriptions.3yearsbackthenumberwentover4,andthey gotconcerned.Sentmeofftourologistforfurtheranalysis,andIagreedtobiopsybeing bestoptionforanswers.12samplesandnothingfound.Now,3yrslater,PSAtestingcame backwithnumberover8. Backtourologist,andnosymptomstoworkwith.So,anotherbiopsywasagreedas thechoicetofindoutifanythingwasgoingon.Thistime,1samplehascomeback positive.Gleasonscoreis6.I’mgladtheycaughtthisearly,aswearenotawareofthere beingafamilyhistoryornot(myfatherpassedawayatage48fromheartdisease,and prostatecancerwasnotevenontheradarwithhim).Iamgoingwiththesurgical removal,andexpectingtheywillgetitall.Iturn47inDecember,andwaspleasedtohave options. Iwastoldthatwecoulddonothingtoday,andIprobablywouldn’thavesymptoms foratleastanother10yrs.However,after10yrs,thesituationwouldlikelyhavebecome moreadvancedandhavedifferenttreatmentoptions.Beingthetypewhopreferstodeal withsituationsbeforetheybecomedifficult,I’mmuchmorecomfortabletakingcareofit today. Afterthefirstbiopsy3yrsago,IwasabitskepticalaboutPSAtesting(went throughtheprocessandnothingwasfound–well,thatwasn’tfunatall). Iwentthroughthesecondround3yrslater,becauseIwantedtodowhatIcouldbe aroundformywifeandfamily.Havingnowfoundthecancerwiththesecondround,I haverevisedmyopinionandisasupporterofPSAtesting.Sure,thereareotherthings thatcancontributetoarisingPSAandprostatecancerisusuallyslowgrowing.But,I’d ratherbeinconveniencedandtaketheavailabletests,ratherthanignoreit.IfIwas20yrs older,I’msureIwouldseethesituationdifferently.Untilthereisabetteroptionto replacePSAtesting,Isayitissavinglives(especiallyinthe“”under59?”demographic).” Paul IhavebeenhavingannualPSAtestsaspartofannualcheckupsprettymuchever sincethetestbecameavailable(Iamnow72).Theresultswerealwaysnormal(below 1.0)until2008,whenthereadingwasabout2.5.Thesuddenchangecausedmydoctorto recommendabiopsy,whichshowedanearly‐stageprostatecancer,notdetectablebya digitalexam. Afterdueresearch,Ichosetomonitortheprogressofthecancer. Whenthenextreadingcameinat3.3,Idecidedtreatmentwasindicated.AgainIdidmy research,andconsultedwithaurologistandaradiationoncologistaswellasmyprimary carephysician.Takingallthefactorsintoaccount,Ioptedforexternalbeamradiation therapyinthesummerof2009. Thankstostate‐of‐the‐artequipmentatmylocalhospital,andanexcellentteamof physiciansandtechnicians,Ihadabsolutelynosideeffectsfromthetreatment.MyPSAis Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page175 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. nowbelow1.0again,andIhavenoreasontobelievethatthecancerwillcausemeany problemsinwhatremainsofmylife. IfirmlybelievethatIamhealthiernow,andhavealongerlifeexpectancy,thanI wouldhavebeenwithoutearlydetectionandtreatmentofthecancer,thankstothePSA test.IfIhadwaitedforthecancertobedetectablebyadigitalexam,itmightwellhave beentoolatetoeradicateit. Havingreadthenewsstoriesabouttherecentcommissionreportrecommending againstregularPSAscreening(butnotthereportitself),Isuggestthattheproblemtobe addressedisnotgivingmentheinformationthePSAtestprovides,buthowtheydealwith thatinformation.Certainlynobodyshouldimmediatelysubmittosurgeryorradiationon thefirstindicationofanelevatedPSA.Iwouldsayoneshouldevenwaitforabiopsyuntil afterasecondPSAreadingthreeormoremonthsaftertheinitialalarm. Doctorsshouldmakeitcleartopatientsthatprostatecancersgrowslowly,and thereisplentyoftimetodecideonthebestcourseofaction.Iftreatmentisindicated, doctorsshouldfullyexplaintheentirerangeofoptionsandtheprosandcons,therisks andbenefits,ofeach.Andpatientsshouldmaketheirfinaldecisionabouttreatmentin consultationwithaphysicianwhohasnofinancialstakeinthechoice.Butdenyingmen theinformationavailablefromaneasy,reliabletestbecauseoffearsabouthowthey mightusethatinformationisnotasensibleorhumanesolution. Anonymous Prostatecancerisreadilycurablewhendetectedearly.Withouttheearlywarning PSAtestingprovides,mylow‐riskprostatecancermighthaveeasilyprogressedbeyond cure‐certainlevels.Typically,prostatecancersymptomsarenotapparentduringtheearly phases.Myannualandsemi‐annualphysicalsofferedinsightsthatguidedmychoiceson medication,additionaltesting,cancertreatments,dietexercise,etc. NewtestsnowindevelopmentmaysoonreplaceexistingPSAexams,theypromise improvedaccuracywithfarfewerfalsepositives.Untilthemedicalcommunityapproves andadoptsthesenewtestingentries,thenowcommonPSAandDREtestingmethods shouldalwaysbeemployed. Robert IhadbeenhavingmybloodtestsdoneaspartofmybeingintheAirForceReserve. AspartofthenormalbloodworkbaseonmyagetheDoctoralsoorderedaPSATest. WhenitcamebackmyPSAwas15.TheDoctorcalledmeinandrecommendedIseea Urologistrightaway.AfteranumberofothertestshetoldmeIHADPROSTATECANCER, anditstillmightbecontainedintheProstate.IhadthesurgerytoremovemyProstate, andforfourandahalfyearsthePSAwasZero. Thenthenumberstartedtorise.By2001ithadrisentoTEN,whentheDoctor recommendedIhavesalvageradiation.ThisdidknockdownthePSAnumber,butagain Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page176 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. startedtorise.AboutFouryearsagoIstartedonLupron,andthishadkeptthePSAbelow one. IhadnosymptomspriortothefirstPSAtest.IftheDoctorhadnotorderedthePSA testImostlikelywouldeitherbedeadbynoworinclosetodeathandinalotofpain. IthankGodthatmyDoctororderedthetest. Sharon MyhusbandwasdiagnosedwithadvancedprostatecancerafterhisfirstPSAtest atage53.Hehadonlyafewvaguesymptoms.Earlytestingtoestablishabaselineand thenregulartestingaftermighthaveallowedustodiscoverthecancerwhileitwasstillin acurablestage. Whilenotfoolproof,theinexpensivePSAtestisatoolthatwouldhaveallowedus togetmoreinformationandmakeinformeddecisions. Thereshouldbeveryfewmeninthisdayandagediagnosedwithadvancedprostate cancer.” William IwasdiagnosedonApril4,1999followingaDRE……DXwaslumpsonbothsides ofthegland,thenPSAwas16.7,thenBiopsyshowedcancerwithaGleasonof7&Grade T3. DotopersonalreasonsIwaiteduntilMarchof2000tostarttreatment.Atwhich timemyPSAhadincreasedto23.X,duetoaboutofBladderinfection. Treatmentwas3D‐EBRTat78graysplusLuproninjectionsfor1year…. IhavesincemonitoredwithPSAonly...1strecurrence,afterapprox.5years,Itreatedwith 6monthofEligard…2ndrecurrence,afterapprox.3years,Itreatedwith6monthsof Eligardplus30daysofCasodex…3rdrecurrence,afterapprox.2years,Itreatedwith6 monthsofEligardplus6monthsofCasodex.. Thatbringsmeuptodate,Survivorof12years!!ImpotentduringHormone treatmentbutrecoveredafterthefirst2boutsanddon’tknowaboutcurrentrecoverydue toadvancedage(notCancer)….Noincontinenceatanytime... Ineglectedtostatemyageatdiagnosiswas63,currently75... MyOpinion,sequenceofdiagnosingshouldbe:RepeatedchangeinDRE,thenPSA test,thenBiopsy,Thendiscussion(inDepth,especiallyaboutsideeffects)withyourDr., thenTreatmentofYOURchoice...Researchshowsverylittledifferenceintheoutcome… IfIhadittodoover,IprobablywouldhavestayedonHormonesforalongerperiodof2 years. Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page177 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. Michael PSAtestingalertedmyphysiciantopossibleprostatecancerproblems.The urologistIwasreferredtoaurologist,whodidabiopsy.Thebiopsyindicatedasmall numberofmalignantcells.Evenso,Ioptedforsurgerytoremovetheprostate.Even thoughIactedinatimelymanner,thepathologyreportdeterminedthatthecancerwas breakingthroughthecapsule.Surgicalmarginswerenegative,however. Iwas53yearsoldatthetimeofsurgerywithnophysicalindicationofprostatecancer. Thiswasalmost10yearsago.MyPSAcheckssincethenhavenotbeendetectable. IthinkregularPSAtestssavedmylifeandsavedmefromapainfuldeath. ButfortheregularPSAtesting,thecancerwouldhaveescapedtheprostateandspread beforeitcouldhavebeendetectedbydigitalrectalexam. Dealingwithsurgeryandstrugglingwithincontinenceanderectilefunctionissues hasbeenastruggle,butnothingcomparedtobeingdiagnosedwithadvanced metastasizedprostatecancer. ItwouldbeirresponsibleanddownrightstupidtoNOTmonitorPSAbeginningat age50,age40wherethereisafamilyhistoryofprostatecancer. RegularPSAtestingandbiopsywhereindicatedcandeterminewhetherprostatecanceris present.Thisisinformationthatempowersthepatient. Whatthemedicalcommunityneedstodeveloptohelpthatpatientisawayto determinewhetherthecancerisasmalltumorthatisslowgrowingandnotanimmediate healthrisk,oracancerthatisaggressiveandisgoingtoprogressquicklyoutsidethe prostatecapsuleandbecomeadvanceprostatecancer. Paul IhadaroutinephysicalexaminationandbecauseofaPSAtestIwastoldtoseea Urologist.WhobecauseofthistestdidabiopsyandhadastageDprostatecancer. Prostatecancerispainlessuntilitgetssobad.Ihavenowsurvived20yearsoflifedueto PSAtesting. Christopher Test,test,test! PSAtestsrevealedanescalatingscoreoveraperiodofseveralmonths. Accordingly,abiopsywasconductedindicatedaGleasonscoreof8—veryaggressive. Surgeryandhormonetherapyfollowed.PSAhasbeenundetectablesincesurgeryovera yearago.WithoutthePSAtesting,Iwouldneverhaveknownaboutthecanceruntiltoo late. Ican’trecommendtestingenough. Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page178 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. Anonymous PSAtestingquiteclearlyhassavedmyhusband’slifeoratleastsavedhimfroman earlierunnecessarydeath.Attheageof44hewasgivenaPSAtestbyaGPaspartofa generalscreening.HisPSAwasalreadyat4.0,afterfollowingitforthenext2yearsand watchingitriseandraiseitultimatelywentto21atwhichpointheunderwentabiopsy andwasgiventhediagnosisofStageIIIPCa,withaGleasonscoreof10(thehighestscore possibleforaggressiveness). Duringthe2yearsofregularPSAscreeninghewastoldonmanyoccasionsthat menhisagedoesnotgetPCaandthatitwasprobablynotcancer.Atthetimeofdiagnosis andbysomestrokeofluckhiscancerhadnotyetspreadtohisbonesorlymphnodesbut hadalreadymovedoutsidetheprostateitself. Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page179 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. IamcertainthatifhehadnothadthePSAtestat44andwaiteduntilthe“usual” ageof50theywouldhavefoundthatthecancerhadalreadyspreadtohisbonesand othertissues,makinghisprognosisextremelypoor.Hehasnowhadtheabilitytoundergo treatmentandfightthecancerwhichinhiscaseisveryaggressiveandwouldhavesurely takenhislifewithinacoupleofyearsifhehadnotknownofitandthereforenot undergoneanytreatment. Mike MyPSAwasgraduallyincreasinginmylate50'sandfinallyhit5.0.Mydoctor ordereda“”free”"PSAtestwhichindicatedcancer.MyUrologistwasreluctanttodoa biopsywithjustthePSAdata,butwhenconfrontedwiththe“”free”"PSAdatawentahead anddidit.TurnsoutIhadcancerinbothlobeswithaGleasonof6.Ielectedtohavea radicalprostatectomyasthepredictionwasforthecancertospreadoutsidetheprostate withinthenext3years. Iamsixmonthspost‐surgeryandmyPSAisundetectable.Ifeelgreat.Andmy continenceismuchBETTERthanbeforesurgery.PriortosurgeryIwouldhavetheurgeto urinateeveryhour.Nowitisaboutevery4hours.Also,Icansleepthruthenightwithout theneedtogetup.Mypotencyisgraduallyreturningtonormal.WithoutthePSAtest,and the“free”PSAtest,Iwouldbelookingatyearsofmisery. Anonymous Iama23yearsurvivorofPCa.IwasdetectedthroughaDREbecausethePSAtest wasnotyetusedasadetectionmethod;ratheritwasusedasadiagnostictooltotrackthe activityofProstatecellsafterafailedprostatectomy.Atthattask,itworked(andstill works)verywell. ItseemstomethatalltherecommendationsoftheTaskForce(whichIhaveread hasnoUrologist,noRadiologist,norOncologistonboard)arebasedonfailureto“”save lives”";thattherearetoomanylevelsofPCaforthetesttobeeffective.Butinordertobe adjudged,thepatientmustfirstknowthelevelandthereforehaveundergoneatestto knowwheretostart.Theearlierthetestinboththepatient’sageandstageof(IF)PCa,the morelikelyagooddiagnosisis. ThePSAtestservesessentiallythesamefunctionasaSmokeAlarm.Somethingis notnormal.Thediagnosisistobebasedonthephysician’sfurtherinvestigation.So,we haveatool–imperfect,butuseable.Whatneedsbedoneistodevelopabettertool–now beingresearchedintensively–andbetteruseofthetoolthatwehave. Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page180 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. Joe Frommy40’sonIhadaphysicaleveryyear.WhenIwas59Ichangedmyprimary caredoctor.ThenewdoctoraskedifIhadeverhadaPSAtest.Isaidno.HedidthePSA testalongwithathoroughdigitalexam.PSAcamebackat5.4.Hereferredmetoa urologistwhorecommendedabiopsy.Itcamebackpositive,Iwastreatedandremained cancerfreefor10years.PSAstartingrisingagainandIamnowonhormonetherapy.Iam surethatifIhadPSAtestingdonefromthetimeIwas40,thecancerwouldhavebeen caughtmuchearlier,andIcouldhavehadabetterlongtermresult. Anonymous MyfirstPSAwas4.45in1993overtheyearsitwentaslowas2.5andashighas 5.5in1998Ihadabiopsywhichshowednocancerbuthadpincellsinsomesamples.The biopsywasrepeatedinDec98andpcwasdetected.AfteraradicalinFebruary1999my PSAbegantoriseandIwentonhormonetherapy,whichIamstillon.Thedigitalrectal nevershowedthepc. Anonymous Whileit’struethatPSAscreeningwhenwecan’ttellhowacancerwillprogressis currentlyresultingintreatmentsthataresometimesunnecessary,thealternativeisthatif peoplearen’tscreened,theyhavenowayofknowingtheyhavecanceruntilit’susually toolate.Screeningisthesmarterchoice–nowweneedtoputourresearcheffortsinto beingabletodeterminewhencancerswillgrowandwhentheywon’t.Sideeffectsfrom myprostatecancertreatmentaresometimeinconvenient,butgettingacancerdiagnosis whenit’sbeyondtreatmentwouldbemuchworse.AsaresultofPSAscreening,I’ma cancersurvivor,notacancervictim. Ed DuetoayearoveryearsignificantriseinmyPSAscore(3.4to7.0)Iwasadvisedto havea12shotbiopsy,whichshowedonlyonecancerresult(.05%).Givenmyfamily historyofprostatecancer–Fatherdiedofit,andtwoyoungerbrothersdiagnosedinlate 50s/60s–Ioptedtohavemyprostateremoveddespitetheoptionofwatchfulwaiting. Goodthing,thepostoppathologyreportindicatedthatmyprostatewasriddledwith cancerandhadspreadbeyondthecapsule–butfortunatelynotbeyondthemarginsofthe surgery.ThePSAtestisnotperfect,butuntilsomethingbettercomesalongitshouldbe madeavailablethroughmedicalcoverageprograms.Follow‐upPSAscreeningsare importanttoo!! Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page181 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. Richard Asahealthy53yearoldthePSAtestsavedmylife.Afterbiopsyconfirmedcancer withaGleasonscoreof9,Ihadroboticsurgery.Thecancerwasstage3havingescaped theprostatebutallmarginswereclear.Now2yearslaterIhavenoongoingissuesrelated tothesurgery.Mymom,sister,twodaughters,fourgrandchildrenandmypartnerareall verygratefulthatIhadthetestthatsavedmylife.WithoutthePSAtestmylifewouldbe endingsoon. Rick Becauseofmyfamilyhistory,PSAtestingcaughtmycancerveryearlyandgaveme manyoptionsfortreatment.IfPSAtestingisdiscontinuedformostmenpeoplewilldie becauseofthatdecision.That’sthebottomline. Dean PSAtestingdone19monthsagosavedmylife!!!!Marchof2010IfoundoutIhavea PSAreadingof8.22,afterthisIhadadigitalexamwhichindicatedIhadprostatecancera biopsywascompletedlocatingwherethecancerwas.Fortunatelyitwascontainedwithin myprostateandnotoutsidethemargins.IhadsurgeryonJuneof.ItisnowOctober,2011 andIremainingoodhealthfollowedbymyDoctormonitoringmystatus. AccordingtomysurgeontheygotallthecancerandIremaincancerfree.Hadit notbeenforthePSAIhaddoneduringaroutinephysicalasavolunteerFiremanIwould hadneverknowntherewasanythingwrongandthecancerwouldhavegoneundetected. Anonymous Myhusbandhadfewmedicalproblemssorarelysawaphysician.Thefamily practicephysicianmanagedtodoacompletephysicalonhimincludinghisfirstPSAtest in2005whenheturned67.Somehowtheresult[7.0]anditsimportancewerenot communicatedtomyhusband. Thefamilypracticephysiciandiedshortlyafterandyearswentbyuntilhewastold toseeanotherfamilypracticephysicianbecauseofhighbloodpressurein2009.Ihad beenfussingwithhimforyearsaboutwhatIwashearinginthebathroominthemiddleof thenighttonoavail.ThesecondcompletephysicalincludedaPSAtest. Thisdoctorrefusedtobeignored.ThePSAwas40.5andfurthertestingwasscheduled. Theprostatecancerhadmetastasizedtotheretro‐peritonealperioticlymph glands.Thelocalurologistandmedicaloncologistagreedthatsurgeryandradiationwere nolongerpossibleandputhimonCasodexandLupron. WetracedbackhismedicalrecordsandfoundthefirstPSAresultsandwere devastatedtolearnthathecouldhavebeentreatedforacurein2005.Instead,thedeath ofthedoctorwillcausethedeathofmyhusbandsoonerandpossiblymorepainful.He continuestoteachandisworkingonhis“bucketlist”,writingnovelsfuriously.Bytheend Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page182 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. of2010thePSAwasrisingagain.RightnowweareenjoyingarespitewiththeCasodex withdrawalresponse.Butitishardtoplananything,notknowinghowlongthe“”good”" timewillbe,knowingthe“”bad”"timeissurelycoming. Weworryaboutoursonwhosematernalgrandfatherdiedofprostatecancer beforeourson’scollegegraduationwithhonorsandmaternalunclefoundhisprostate cancerearlyenoughforseedradiationtherapy.At40,hehasn’thadaPSAtestyet.Will thisnewrulingsendhimdownthesameroadashisfather? Don Iwasdiagnosedwithadvancedprostatecancershortlybeforemy70thbirthday.I hadradicalsurgerythatdidnotgetitall.Thecancerwasoutsidetheprostate necessitatingthatIsurgicallybecomeincontinentandimpotent.Myprostatecancerisin mylymphnodes.Iamnow2.5yearsintohormonetherapytokeepitatbay. Unfortunatelythistherapydoesnotworkforever.StatisticallyIhavelessthan3 yearstolive.TodayIamveryactive,creativeandproductive.It’sdiscouragingtoexpectit couldendthatsoon. Formorethan20yearsIwassohealthythatIfailedtoreplacemyprimarycare physicianwhoretired.DuringthoseyearsIwentto2or3specialistsbrieflybutnoneof themsuggestedIgetaPSAorDRE.Ineverhadthetypicalsymptomsthatprecedea diagnosis.MyfirstPSAtestwasnotaccompaniedbyaDREbut4monthslateritwasand thedoctorsentmeimmediatelytoaurologist. HadIretainedaprimarycarephysicianorhadanyofthespecialistssuggested testingmyfuturewouldlookawholelotbetter.Iamnow73.Myfatherdiedat83andmy motherdiedat99.RoutinePSAandDREtestingnodoubtwouldhaveresultedinearly detectionandaprobablesurgicalcure.InsteadIhaveahorriblypainfuldeathtolook forwardto.PSAtestingisverysimpleandshouldbepartofroutineexaminations.The problemtodayisnotfailureofthetestbutinappropriatefollow‐upafterpositiveresults. Ihaveanolderbrotherwhoseprostatecancerwasdiscoveredinroutine examinationbyhisprimarycaredoctorshortlybeforeminewasdiscovered.Hewasinthe earlystagesandisinwatchfulwaiting,andhisPSAisonthedecline.Notonlyishis prognosisbetterthanmine,hislifequalityismuchbetter.Imayneverreachtheagehea hasalreadyattained. PSAtestingisaMUST.Wisefollow‐upisevenmoreofaMUST. Anonymous Myhusbandwas49upondiagnosis,andonlybecauseofanotherissuedidhis primarysendhimtoaurologistwhodidaPSA.HisPSAwas69.5andcancerwent undetectedeventhoughhisprimarydiddigitalrectalexamseveryyearfor5years!My fatherinlawjustdiedofprostatecancerat95….buteitherhaditanddidn’ttellanyoneor wasnevertested.Hadhebeentestedorhadweknown…..myhusbandmayhavehada Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page183 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. PSAalotsooner.HisfinalGleasonwas9/10.Hehadradicalsurgery,numbersup,45days ofradiation,andLupron.It’salmost5yearsandhisnumbershavejuststartedtogoup again.IthankGodfortheselast5years.AndI’mhopingforadvancesthatwillhelp managehimforthefuture.Weareveryrealistic. IwillmakesurethatmysonhasaPSAat25andeveryyearthereafter.To recommendforegoingPSAtestingisaboutmoney,nottreatmentordiagnosis.The governmentiswillingtoletpeoplelikemyhusbanddieordiealotsoonerby recommendingtheyNOThaveaPSA.Likeeverythingelse,thecourseoftreatmentwillbe determinedbythepatient.HadmyfatherinlawhadhisPSAorsharedit,myhusband’s outlookandlifewouldprobablyhavebeenalotdifferent.Mysonnowhasachanceto overcometheodds. Iffornootherreason,PSAisneededforyoursons.Sotheyknow,sotheycanbe diagnosedearly.Everyoneknowsthatearlydiagnosisofanytypeofcancerisessentialif youarelookingforacure.Iwantallofourhusbandsandsonstohavethatopportunity.” Robert InAugust2007Iwasnotifiedbymyphysicianthatmyannualcheck‐upshowed thatmyPSAhadrisenfrom3.2to4.2.Thedigitalprobeindicatednoabnormalities.Iwas advisedtogotomyurologistandhaveabiopsy.Iputoffthebiopsyfor30daysdueto pressingwork.InthemeantimeasecondurologistrecommendedarepeatPSAinsix months. Afteranothercallfrommyprimaryurologisturgingmetodothebiopsy,we completeda12pointbiopsyoftheprostateinlateSeptember2007.OneweeklaterIgot thecallthatbiopsywaspositivein6samples‐mostlyrightsideconcentratedtoward apex.Twosampleswere80%canceroustissue.MyurologistinformedmethatIhadan “”aggressive”"cancer. Overthenext6weeksImetwith8urologists,surgeonsandoncologiststo determinebestpath.Everydoctorhadachancetoviewtheslidesbutnotuntilmylast doctordidhecarefullyreview,alongwithhisexpertteam,theslides,thelocations,etc.As wewereleavinghisofficehestatedtome“donottaketoolongtodecide”.WhenIasked himwhyhestated“Youareoneofthoseaggressivecases,withouttreatmentyoumaybe deadinacoupleofmonths.” Weoperatedon23November2007.OpenRRP.Aweeklatermysurgeoncalled andtoldmethatwewereluckyandwegotitall.WhileIsufferedwith100%incontinence foroneyear,themaleslinghasputmebacktonearlyfullycontinent.IhadEDissues beforesurgeryandcontinuetoworkthatproblem. IchosethemostexperiencedsurgeonIcouldfind.Hewasalsothesurgeonwhotoldme nottowait. IamabsolutelyconvincedthatIwouldbeastatistictodayifnotforthetwodoctors whounderstoodandbelievedinPSAaccelerationandaggressivecancersign.MyGleason wasonly7(4+3),buttheotherfactorsprovidedstrongevidence.” Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page184 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. Steven I’mprettysurethatwithaGleason9,6outof6corespositive,andpostpathology showing30%to40%oftheprostatebeingmalignant,thatIwouldhavebeenconsidered tohavepotentiallylethallyprostatecancer.Iwasrelativelyyoungat58in1995and consideredas,healthy.Iunderwentsurgeryandthingsworsenedbecausepostpathology showedextracapsularpenetrationandpositivesurgicalmargins.Ifollowedsurgerywith radiation. WithoutthePSAtest,biopsy,andtreatment,theoddsareextremelyhighthatI wouldnotnowbealiveat74andwouldhavesufferedfrombonepainalongtheway. Yes,Ihavehadsomeofthesideeffectsofsurgeryandradiation.Thesearerelativelymild andcontrollable.Deathisnot. David Myfatherdiedofprostatecancerin1958atage58.PSA’s,notavailablethen, startingat40yearsofagewouldprobablyhavesavedhislife.IstartedgettingPSA’sat40. Atage57myPSAcamebackwithareadingof13.7(thepreviousyear,itwas4.0).Biopsy showedcancerwithsomesegmentsshowingaGleasonscoreof8.0(veryhighactivity). MyprostatewasremovedinJuly2000andIamnowataPSAreadingof0.0.Iamnowan 11yearcancersurvivor. David Iamaprostatecancersurvivor.WithoutroutinePSAtestingIwouldnowbein agonywaitingtodie.Imissedcheckingoneyearandanaggressiveformofcanceralmost gotaheadofme.Igottreatmentjustbeforethecancerbrokeoutoftheprostate.Addmy voicetothosecallingforincreasedPSAtesting.Itisasprevalentasbreastcancerandcan easilybetreatedifcaughtintime. Anonymous Insummerof08myPSAwas2.1.Insummerof09itwas21.Thenamonthlaterit was28. SoinOctIhadmyprostatetakenout.Thecancerhadspreadtolymphnodes. Mycancerwasgraded8‐9ontheGleasonscore. BecausethecancerwasveryaggressiveIfeelifIdidn`thavethePSAtestthe cancerwouldhavespreadthruoutmybodybynow.” Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page185 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. Mike I’ma59yearoldwhitemale.In2008,aftermonthsofsmallandusuallynon‐ descriptsymptoms,Iwenttothedoctorforacheckup.Mysymptomswere:lowgrade feverseveraltimesaweek,feelingflu‐ishi.e.boneandmuscleaches,nomorning erections,veryweakstream,anddis‐chargeofsmallamountsofsemenafterurinating. ThefirstdoctorIsawpasseditoffasnothing,possiblyfromtheuseofanti‐histamines’ knewthattherewassomethingwrong.Iwentbacktothedoctoragain2weekslater,and insistedonaPSA.Thefirstdoctorwouldnotgivemeone,eventhoughIrequestedit.She statedthatitisonlyrequiredonetimeayear,andIwasnotcoveredfor2testsperyear. Butonthesecondvisit,Isawadifferentdoctor,andshedidthetestasIrequested. Twodayslater,Iwascalledtocomeinforabiopsy;myPSAhadtripledinalittleover7 months.Iwasdiagnosedwithasmallcell,highgrade,grade8cancer.Averyrapidly growingcancer.HadInotseentheseconddry,andhadthePSA,Iwouldhavehadless thanayearleft.Thatwas3yearsago.Iamnowcancerfree,andamabletoperformasa man.Ipraythatallmengetchecked. Lawrence Ihaveafamilyhistory(father‐62andtwoofhiscousins‐70's)ofmenwhodied fromprostatecancerbeforePSAscreeningwasavailable.SoeventhoughIwasvery Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page186 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. “tunedin”PCa,e.g.readingscientificAmericanarticlesdatingbacktothelate90's,itwas arapidlyacceleratingPSA(from.5to2.5inoneyear)thattriggeredfurtherinvestigation withabiopsy(digitalrecitalexamdetectednothingofcourse)thatverifiedCancer.My prostatewasremoved4yearsagoandnowCONFIRMINGPSAtestshaveshownsofarso good. Anonymous MyPSAtestinApril,2005atage50savedmylife.Itspikedfrom3.5to4.5in1 year.MybiopsyconfirmedIhadanaggressivetypeofProstatecancerwithaGleason scoreof7(4+3). IhadanopenradicalprostatectomyatMemorialSloanKetteringanditwas discoveredthatthecancerspreadoutsidethecapsule.However,mysurgicalmarginsand lymphnodeswereclear. IfIhadnottakenthatPSAtest,thecancerwouldhavemetastasizedtomybonesand possiblyotherorgansinmybody. AsanactivememberofalocalProstateCancersupportgroup,Ihaveseen firsthandthetremendousvalueofthePSAtest.Severalofourmemberspassedawayasa resultofnottakingthePSAorbeingmisdiagnosed! Walter 3yearsago,myPCPtoldmethatthePSAtest(0.9)andthedigitalexamwere normal;howevermyenzymelevelwaselevated.IdecidedtoseeaUrologistforasecond opinion.TheUrologisttoldmetheenzymelevelwasnormalandthathewantedtodoa digitalexam.Iagreedandhefoundafirmspot.Hesuggestedthatabiopsybedone;itwas subsequentlydonethesameday.Ofthe16samples,1camebackpositiveforProstate Cancer. Onthenextvisit,wehaddiscussedmyoptionsandhisrecommendations.Iopted forroboticsurgery.Whenthepathologyreportwascompleted,itwasdeterminedthatmy prostatewas10%infectedwithCancer.ConsideringtheinconveniencesthatIhaveto dealwithonadailybasis,Ihopetobearoundformanymoreyearstoenjoymy grandchildren. Ihavebeencancerfreefor3years,andIdon’tregretthedecisionthatImadeat thattime.IurgeALLmentogettestedandchecked,regardlesshowimperfectthePSAtest is.Itisbetterthangoingthroughthepainandagonyofthedisease. Carl Ifeelthatevenifthereareproblemspre‐treatment,afterexternalbeamradiation thenumberaccuracywasn’tanissue,itwasaquestionofwhetherthenumberwent down.Thereisaccuracythere. Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page187 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. Jim ThePSAtestsavedmylife. IhadacompletephysicalwhenIwas50yearsold.NoPSAwasdone.Thenexttotal physicalwasdone9yearslaterwithaPSAdone.Itshowedittobe34! WithoutthetestresultsIsurelywouldbedeadbynow.AGleason8wasfoundandthe appropriatetherapiesweredone. Iamcontinuingtherapyandamholdingthebeastsomewhatatbayalmost10yearslater. Robert 2yearsago,normalDRE,PSA6.4andrising,Proscarstudyparticipant,biopsywith 2positivecoresoutof12,ProtonBeamRadiotherapyandPSAnow0.38.Veryaggressive cancerdetectedandtreatedthankstoPSAtestthatwouldhaveotherwisegone undiagnosedanduntreated.I’monly74andwereitnotforregularPSAtestingIwouldbe lookingatmetastasesinthenearfuturewherenowIhavealifetolivecancerfreewith mywife,childrenandgrandchildren.Thepatientandtheirphysicianshouldbethe decidingpartiesontesting. Anonymous MyrisingPSAwasignoredandIfirstlearnedIhadprostatecancerAFTERI discoveredIhadbonemets.Thiswasacaseofmedicalmalpracticeanditwenttotrial. Themeritsofthecaseweresubstantiatedincourt.Butthatfactisirrelevant.What mattersarethatthetreatmentsIhavehadtoundergosincethenhavebeengrimandlife threatening.Hadthetreatmentsbegunearlierthecancermayhavebeenpreventedfrom migratingtothebones. SincemybonesarebreedingcancercellsIamatriskforcastrationresistantcancer developingearlier.FurthermorehadthetreatmentsbegunwhenthePSAwasrisingI wouldnotbeatriskfornecrosisofthejawcausedbyZometa.Hadtreatmentsbegun earlierIwouldnothavehadtohearthatIhad6monthstotwoyearstolive(8yearsago). Hadtreatmentsbegunearliermybloodwouldnothavebeencompromised.Had treatmentsbegunearliertheinsurancecompanymayhavehadtospendlessthan 429,000dollarsandthehospitalwouldnotpayalargemalpracticeclaimsubsequentto sloppyrecordkeeping. Idon’targuewiththeexpertsthatearlyPSAtestsleadtounnecessarytreatments andharm.Butthisproblemhasmoretodowithoverlyaggressiveoncologists,urologists, radiationoncologists,andsurgeonsandscaredignorantpatients.Ourfearofdeathand theDocsneedforaplentifulsupplyofpatientshavemadeforaperfectstorm. Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page188 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. Jerry IbelievethatPSAtestingsavedmylife,16yearsagoandthankmyurologistforthe testsandtheradicalprostatectomythatfollowed.Ifsomedoctorsareoverlypushingfor treatmentthatshouldnotbedone,shameonthem.ButtoclaimPSA’sarenotsavinglives, that’swrongandthemediashouldbepresentingabalancedstorynotascaryheadline thatmakesnewsbutcouldbekillingsomemen. Jim MyGPstartedPSAandDREtestswhenIwas70.TwoyearslatermyPSAjumped from3to3.7intwomonthsbutmyDREwasnormal.Iwasbiopsied,cancerwas discoveredandIhadaGleasonscoreof6andthenhadBrachytherapy.MyPSAreached 1527monthslaterandIwasdiagnosedwithprostatecancermetastatictothelymph nodesandI’vebeenonIntermittenthormonetherapyeversince.ItlookslikeIhavean aggressivecancerandwithoutPSAtestingitwouldhavespreadmuchfasterandIwould probablybedeadinsteadoflivingareasonablynormallife. PSAtestinghasprolongedmylifesignificantly.” Anonymous Becauseofmyfatherandyoungerbrotherhadprostatecancermyurologist recommendedthatIhaveaPSAtestsemiannually.Insucceedingtestsin1998‐1999my PSAscoreswere.4,then.6andthen1.1soherecommendedasextantbiopsy.Onepick showedcancer.Iunderwentbrachytherapy.WithoutthePSAtestsmyprostatecancer mighthavegoneundetectedforyears.Whoknowswhattheconsequencesmighthave been! Mark Iwasscreenedwhenthetestingthresholdwas4.0.Mycancerwasaggressivebut threwoffverylittlePSA. Wouldhavebeenbetteroffwithatestingthresholdof2.5 BytimemyPSAwasupto6biopsyshowed8outof10corespositivewithGleasonof8. Joe Iwasdiagnosedatage47.WhenIwas45Ihadaprostateinfectionandwenton someantibiotics.AtthattimemydoctordecidedtodoaPSAtest.Thelevelwas1.7.He decidedthatgoingforwardweshouldtestjusttokeeptrackofthenumber. Atage46thenumberwentto2.2andatage47itjumpedagainto2.9.Becauseofthe upwardtrendherecommendedIgoseeaurologist.Wetalkedaboutthenumbersand Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page189 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. decidedthatitwouldbeagoodideatodoabiopsytolevelset.Wereallydidnotexpectto findanythingbasedonthePSAandDRE. Welloneofthecoresthatbiopsiedwasslightlypositive.Wediscussedeverything fromwatchingandwaiting,toradiation,tosurgery.Iknewthatitwoulddrivemecrazy doingwatchingandwaitingandoptedforsurgery. Whileonlyonecorewasslightlypositive,over35%ofmyglandwascancerousbut itwascontained.IcannotevenimaginewhatmighthavehappenedifIwaitedtillIwas50. Sofar,myfollow‐upshavebeenverygood.Yestherearethesideeffectsthatyoudeal withbutyoulearntolivewiththem. IfIamgoingouttoplaygolfinthemorning,Iwillhavedecafcoffeeinstead,orwait untilwemaketheturn.Overtimeyoulearnwhatyourbodycanandcan’thandle,andif youarediligentaboutyourKegelexercises,yourecoverquickly.Istruggledthefirstfew weeks,butwithinamonthIwasbacktowork,bowling,doingjustabouteverythingIdid beforethesurgery.Iwouldratherthesideeffects,thenfindingoutatage50andpossibly nothavingasmanyoptionsavailable.SincethattimeIhavetoldanyonewillingtolisten aboutwhathappenedtomeandhaverecommendedtothemthateveniftheyarenot50, gogetabaselinetestdone,sothatifyoudoctorwantstowaittill50tostartroutine testing,atleasttheyhavesomethingtocompareitto. Anonymous Atage48Ihad3TcPC.AlthoughmyfirstdoctortookthePSAtestatage45andI had3.4hedidnothing.At48myPSAwasstill3.4butabiopsyconfirmedPC.Thecolor flowDopplerconfirmedstage3tc.SoifallIwascountingonwasthePSA–I’dbedead becauseitdidnotmove.ImyurologistwhyifPCissocurablethenwhydo30kmenayear die?Heaskedmethis;“Whatdoyoucallthedoctorthatgraduatedthetopoftheclass?”I saidIdonotknow.Hesaid,“Adoctor.”Hesaid,“Whatdoyoucallthedoctorthat graduatedatthebottomoftheclass?”IsaidIsupposeadoctor.Hesaid,“Rightandthe pointisthatmanymenjustseetheworddoctorandthinktheyareallthesameandthey arenot.” Itookthistomeanthatweneedtoseekoutthebestdoctorswhenweareonthe life/deathline.SotomeI’dsayitwasn’tsomuchthePSAtestbecausemyfirstdumb doctormisseditandletitmoveupthestagesandwhenthesymptomworsenedandI madeittootherdoctorsthesamePSAnumber–buttheyfoundcancerwithbetter technologysuchascolorflowDopplerultrasound.Finalwords:didthePSAtestsaveme– probablynotitwasthatIhadgreatdoctors Anonymous OnJan.122011Iunderwentaprostatebiopsy.NobigdealIthought.ME,prostate cancer,huhthat’salaugh.OnMarch17,2011IwasdiagnosedwithPC.I’mnotlaughing anymore.IhadaPSAof5.36andaGleasonscoreof7.Icriedfor2monthsandjust Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page190 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. wantedtodieandgetitoverwith.May9,2011,underwentaRP.Spent2weeksinthe hospital,1weekhome,then2moreweeksinthehospitalwithaUTIandGout.Came homeandsufferedfor3monthswithdiaperrash,incontinence,impotency,cathetertube andjustgeneralweaknessfromsurgery.Ijustwantedtodie.Ithasbeen5monthsnow andundergoingradiationtreatment,(allthecancerwasnotremoved)Ifeelmuchbetter physically(excepttheincontinencepart)butIhavebeentoldatbestonly10moreyears.I ambeingtreatedformajordepressionandalwayswillbe.PLEASE,PLEASEgetyourPSA checkedandthebiopsyisapieceofcake.Ileastyouwillputyourmindatease,hopefully. P.S.Iama57yearoldmaleandmarried. Michael Atage48Iaskedthedoctortotestmeduetofamilyhistory.MyPSAwaselevated andtwoweekslateritwasmoreelevated.ShortlyafterIhadabiopsytoconfirmcancer andwithinamonthIhadmyprostateremoved.ItrulybelievethatPSAtestingsavedmy life. Dale PSAtestingsavedmylife.In2010,myGPsawachangeinmyPSAnumbers. Nothingsignificant,rangingfroma2.0toa4.5,andbackdownagain.MyGPturnedme overtoaurologist,whomscheduledmeforabiopsy.ThebiopsyshowedthatIhad Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page191 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. prostatecancer.Sixmonthslater,Ihadanopenradicalprostatectomy.Thebiopsyonthe prostateshowedthatthecancerwasmoreadvancedthanoriginallythought. WithoutthePSAtesting,Iwouldnowbefightingprostatecancer,whichmorethanlikely wouldhavespreadtootherareasofmybody,throughradiationandorchemo. John Afterundergoingabiopsy,IwasdiagnosedwithinoperableProstateCancer.For fiveyearspriortothediagnosis,Ihad6monthlyPSAanddigitalinspections,myPSAwere 5.0andhaveneverbeenhigher. Atthefirstdigitalinspection,therewerelumpsinmyprostate,butIwastoldby myMDthattheywerecausedbyage.ItwasonlyonmyrequestthatIwassentfora biopsy.Eightspecimensweretakenandtheyallcamebackpositive. MyGleasonscorewas4+4=8andthecancerhadmovedoutsidetheProstate.Iwas toldbytheurologistthatIhadaveryaggressivecancer.TheonlyoptionsIwasgiven,was hormonetreatmentandradiation.IwasonLupronfor6monthsthenreceived36 radiationtreatments.TheradiationdamagedmybowelandanusalsoIamImpotentand haveED. Iwashavingtri‐monthlyLuproninjectionsforaboutfiveyears,thenmyPSA startedtoriseagainto5,IwasinformedthatmycancerwasintheadvancedstageandI wasprescribedCasodex,aswellastheLupron. Ihavebeenpassingquitealotofbloodinmyurineforthepast3years,butafter2 exploratoryoperationswhichfailedtostopthebleeding,IwastoldIhadtolivewithit,as theycouldn’tfindthesourceofthebleeding. Lastmonth(October2009)myPSAstartedtoriseagainandIwasadvisedtoseea MedicalOncologistregardingtheadvancesinChemofortheproblem.Theoncologistdid notrecommendthatIbetreatedbychemo,butsuggestedthatIgoonaTrial,beingrunby CougarBiotechnologies,whoaretestingthedrug,AbirateronAcetateplusPrednisone (CB7630).Ihaveagreedtotakeplaceinthistrial,butthereisa50%chancethatIwillbe administeredaplacebo,asitisarandomizedDoubleBlindPlaceboControlledStudy, whichofcoursemeansthatifIgetthePlacebo,Iwillnotbereceivinganymedicationfor thelengthofthetrail,exceptmyLuproninjections(choices,choices). Thecancerhasnowmovedintoa2.5cmlymphnodeinmyabdomen,soitis spreading.IamnowinthelapoftheGods,wishmeluck! Dick MyFathertoldmethathehadprostatecancerwhenhepickedmeupforadrive homefromcollegesome50yearsago.Hesaidnottoworry,thedoctorscouldcureit.He wasinhislate50sthen.Ihearditcameback,butmuchdistanceseparatedus,thenhesaid hewascuredagain.Wemovedcloserandfoundthecancerhadcomebackandspreadto hisbones.Thenfollowedseveralyearsofwatchinghisslowdeclineandincreasingpain. Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page192 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. Hewasstoicaboutthephysicalpain,tookhispainpills.Helivedathome,hadHospice care,butoutlivedthetimetheycouldcoverhim,butsomehowtherewasanextension. ThegreatestpainforDad,Isawinhisfaceandeyeswastheindignityofbecoming dependent,ofturninghislivingroomintoahospitalroom,theindignityofnotbeingable tobeclean. Onedayhestoodupandhiscancererodedhipfracturedandspilledhimtothe floor,Mothercouldn’thelphim.TheAmbulancetookhimtothehospitalwherethey promptlygavehimahipreplacementimplant—andinsodoingclosedthedoorto furtherHospicecare.Motheratage80triedtotakeover,toofrailtoproperlysupport him. Fortunately,(canIreallyusethatword?)themetastaseshadinvadedhisother organsandtheirfailuretookhislife,endingthepaininhisbonesandheart. Startingaboutage40(I’m71now)IhadannualPSAsandDREs;Iknewthatthefamily historyincreasedmyrisklevel.ThreeyearsagomyPSAwentup,justover4.Although Dadhadbeengonefor15yearstheverypresentmemoryofthehorrorofhislastyears mademydecisionforme.Thecancerhadtobeoutofmybodyasfastaspossible.Ihad IGRTandmyPSAshavedroppedtonegligiblevalues.Iknowwecanneverassumethat thecancerwillnevercomeback,butIfeelI’vedonethebestIcansofartomakesuremy familydoesnotsufferanythingliketheburdenofcarethatmyFather’scancerinflicted uponmyMother.” Paul Duringanexitphysicalexam,acompanydoctorsaid,Paul,youaregettingkingof old(age66).Iwantutogetabloodtestforprostatecancer.MyPSAwas4.Iwentintoa watchfulwaitingmodeandenjoyedsexforseveralmoreyearswhilemyPSAwentupto 26. IhadaprostatectomyJune1998.Therewere8cc’sofcancerinmyprostateglandand twopositivemargins.Gleason7.Five&1/2yearslatermycancerreturned.Inowhave advancedPCaandamonintermittenthormonetherapysuccessfulsofar.Myoncologist& IallowthePSAtogofromnearzeroto10.ThenItakethehormonesandthePSAgoes backtonearzero.Thenthetreatmentisrepeatedandrepeated. IfirmlybelieveIwouldbedeadbynow(age84)ifitwasn’tfortheBoeingdoctor recommendingIgetabloodtestforPSAwhenIwas66.Earlytestingforprostatecancer shouldbeaccomplishedonallmenwhowanttodoitviaabloodtestforPSA,andadigital rectalexam(DRE)forlumps. Allen TheVAtestsmyPSAeverythreemonthstoseeifmycancerhasstartedtogrow again.WhenthePSAgoesuptoanunsafelevel,theychangemytreatment.Sinceprostate cancerthrivesontestosterone,thereisashotyoucantaketostoptheproductionofit. Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page193 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. WhenIamnotproducingit,thecancerdoesn’tgrow.Aftertwoorthreeyears,thecancer mutatestogrowwithoutit.Whenthathappens,thePSAtestshowsit,andtheystopthe shotandthecancerstopsgrowing,actuallybecomesdormant,becausethereis testosterone.Inafewyears,whenthecancerstartsgrowingagainbecausethereis testosteronethere,theystarttheshotagain.Thishasgoneonforover20years,andthe PSAstillshowswhentostartorstoptheshot.Ifeelthatitisalifesaver. Anonymous Iwasdiagnosedwithprostatecanceratage45,underwentsurgery,andhave enjoyedthelastnearlyeightyearswithlittletonosideeffects. IwillalwaysfeelfortunatetohavehadaphysicianwhobelievedinstartingPSAtestingat age40.Thefirstfewannualtestswerewithinthenormalrange,butbyage42,my numbershadstartedtomoveup.Overthenextfewyears,myphysicianfolloweda thoughtfulcourse: *re‐testafterafewmonthstomakesuretheresultsweren’tafluke *administerantibioticstotreatapossibleinfectionandre‐testafterafewmonths *refertoaurologistforanultrasoundandDRE *biopsy ThebiopsyresultsshowedaGleasonScoreof6,whilethepost‐opbiopsyshoweda GleasonScoreof7.Thiswasarelativelyaggressivecancer,andIfeelstronglythatIwould notbeinmycurrentgoodhealthifIhadwaitedtostarttestingat50.Ihavebecomean advocateforprostatecancerawareness,andparticularlyofgettingyoungermento understandtheimportanceofstartingtestingat40. AnelevatedPSAisn’tnecessarilyatriggerforimmediatesurgery,butitisanindication thatyourprostateneedsmonitoring! Kevin MyPSA’swere4.5whenIwasfirsttested,Ioptedforthex‐rayradiationtreatment, andLupronshot.NowmyPSA’sareat1.5. IfinishedmytreatmentsinJune,thisyear(2011).Ihadabiopsyafterthefirsthigh reading,andithadshowedthebeginningofprostatecancer.Idon’tknowwhatallthe controversyisabout;asfarasI’mconcernedthetestworks. Bill Myfirsttestwasattheageof54…PSA4.1;followupbiopsyshowed9of12 samplespositive.Ihadsurgeryonemonthlateranditsavedmylife...whynotimprove whatweDOhaveinsteadofdiscouragingtheuseoftheonlyreliabletestavailable?Men needtogettested. Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page194 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. Anonymous ItsavedmylifeIwas49healthyworking6daysaweek12hr.shiftsandlifewas good.IwentforaroutinecholesteroltestandmydocorderedaPSAIdidn’tevenknow whatitwas.Camebacka10notsupposedtobeabovea4wenttoaurologisthadabiopsy andhadtohavearadicalprostatectomyrightawaycancerwasaggressiveandmoving fast. IfmydoctordidnothavethisdoneIwouldnotbeherenow.Iam5yrs.recovering hadtoretirebutlifeisREALGOODnownoworriesjustenjoyingmykidsandgrandkidsI amatpeace.HaveaPSAit’sjusta1ststepandtherearemoreteststohavetoproveifitis cancerornotbuthavethetestit’sastartthatcouldsaveyourlifetoo. Christopher Iwasadoptedasaninfantandhad/havenoknowledgeofmybiologicalfamily’s medicalhistory. Withnosideeffectsorsymptomsofanykind,myfirstPSAbloodtestatage47savedmy life. MyPSAwas62.7....Mybiopsyshowcancerin10or12coreswithGleasonscores of7(3+4)and8(4+4),onewithatertiary9. Mypost‐surgerypathologyreportpresentedasstage3Tb,withpositivemargins,seminal vesicleandlymphnodeinvolvement–averyadvancedandaggressivestrain. Iamluckytohavehaditcaughtatall.HadInotgonetomydoctorforanintestinal infectionwhenIdid,insteadofwaitinguntilmyannualphysicalsomefourmonthslater– myprognosiswouldnotbewhatitistoday. Anonymous Mydoctorshouldhavebeenalertedtomystage4PCawhenmyPSAdoubled.It onlywentfrom1.8toastilllow3.6inayearbutmydoctorandmostotherdoctorsdid notknowatthetimethatit’sthevelocitynottheactualnumberthatismoreimportant.A mereninemonthslater,whenIwasexperiencingseverefatigue,aCTscanshowedan enlargedlymphnode.AbiopsyofthatlymphnodeshowedthatthePCahadalready metastasized.ThissameninemonthslatermyPSAwasnow4.2,intherangewheresome doctorswouldnotevenbegintodotestingbutjustwatch. FormeaPSAtestevery6monthswouldhavesavedmeandmyfamilyalotof heartache.Ihavebeengiven3‐5yearstolive.Imagineif……… Charles WithurinaryissuesIwassentforasonogramthatthereviewerconcludedwas simplyanenlargedprostategland.SixmonthslaterIavailedmyselfofafree“screening” Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page195 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. regardingtheprostatethatincludedaPSAtestaswellasdigitalrectalexamination(DRE). TheDREwassuspiciousandtheUrologistsuggestedthatwhenthePSAresults cameback,tovisitwithwhomeverUrologistIchose.PSAwaselevatedto6.8ng/mland subsequentbiopsyfollowedbyradicalprostatectomydeterminedGleasonScore3+4/7. However,atumorwasfoundtobeextendedinto“fattytissue”sosalvageradiationwas administered.Yet,despitesurgicalremovalfollowedbysalvageexternalbeamradiation mycancerstillrecurredthreeyearslater. Imaginehowadvancedthiscancercouldhavebecomehadthefreeprostate screeningwithPSAtestandDREnotbeenavailable.Withsubsequenton/off/on/off androgendeprivationtherapyIcontinuetosurvive19yearslater.Beingawareofone’s PSAlevelwasandcontinuestobeextremelyimportantasabiomarkerprovidingevidence thatsomethingisoutoforderandrequiresattention.AccompaniedbytheDREthePSA wasandcontinuestobeanappropriatemethodofidentifyingthepossibledevelopment ofprostatecancer. Nomanshouldbedeprivedoftheknowledgeofthepresenceofcancerinhisbody. Theimportanceisinthediagnosingphysicianthenprovidingacomprehensive explanationofwhatthediagnosticsindicateandalltheoptionsavailabletothepatient. Ignorancemaybebliss,asthesayinggoes,butcertainlynotsowhencancermaybein development.WecontinuetoNEEDthePSAbloodserumtestaccompaniedbytheDRE untilsomethingequallyorbetterandascosteffectiveisdetermined.Physiciansarenotto playGodandkeepfromusdiagnosticproceduresthatmaymakeadifferencetoour continuedlivingorearlydemisebecausetheyfailedtomakeavailabletousasimple procedureslikethePSAtest. Anonymous Wasdiagnosedwithanaggressivemucosal(noideahowtospellthatword) versionofprostatecanceratage45.WhenIfinallygaveintohavingtheprostate removed,attheageof47,itwasalreadyonthevergeofexitingtheprostate.Thank goodnessIwasdiagnosedearlyenoughwiththePSAtesting,andthedoctorsremained persistenttothepointIallowedthemtoremoveitwithintime. David IhadmydoubtswhenmyphysicianinsistedthatIhaveabaselinePSAtakenatage 40.Atage48,mybaselinehaddoubledandstartedincreasinggeometrically.Thankfully, myphysician’svigilancecaughtmyprostatecanceratanearlystage,allowingmetohave focalcyroablation.Ididn’trealizeuntilmuchlaterthathealsoprobablysavedmylife. Twouncles,withwhomIhadlosttouch,eacharesufferingfrommetastaticprostate cancer.TheydidnothavephysicianswhoinsistedonPSAscreening. Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page196 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. Bill IneverthoughtIwouldhaveprostatecancer.MyannualphysicalsshowedthePSA numbersrisingfromthe3rangetothe4range,tothe5range,andfinallyintothe6range. StubbornasIwas,Ifinallytookmyfamilydoctor’sadvice,sawaurologist,andhada biopsy,whichshowed6coresoutof12positive,Gleason7(3+4).WithoutthosePSAtests, Iwouldalmostcertainlynowfindmyselfwithmetastaticdisease.Instead,mycancerwas organcontainedandmyprognosisisgood. John WhenIturned40IaskedmythendoctorforaPSAtest.Itoldhimmyfatherhad diedofprostatecancerandIknewIwashighrisk.HeaskedmeifIhadurinaryorerectile issues,towhichIrepliedno.Hesmiledandsaidwellifyoustarthavingproblemswe’ll testyou.MywifeencouragedmetochangedoctorswhichIdid.Mynewdoctorgavemea completephysicalincludingaPSAtestandarectaldigitalexam.Thiswasmyfirstexam ever.ThedoctorfeltanoduleandIhadaPSAof1.0.Iwentthroughthebiopsyandwas confirmedGleasonscore6prostatecancer.Ihadroboticprostatectomytoremovethe cancer.HadmydoctornotdonethetestingIwouldbelookingatthesamedeathmy fatherendured.Prostatecancertestingsavedmylife. Joe Hello,mynameisJoe,at37yearsold,myPSAwasat5.8,Ihadabiopsyanditwas negative.Ayearlater,myPSAwas6.1,theydidadeeperbiopsywithmoresamplesand that’swhentheyfoundoutIhadprostatecancer.I’msothankfulthatmydoctorwas makingsureIwasgettingmyPSAchecked.Ihadtheroboticsurgeryand2yearslaterI’m cancerfree. . Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page197 MEN DIAGNOSED WITH PROSTATE CANCER, FRIENDS AND MALECARE FAMILY TELL YOU WHAT THEY THINK ABOUT THE PSA TEST Men fighting cancer, together. Nowthatyouhavereadthroughmanypatientandfamilystories,please decideforyourselfifyouwanttohaveaPSAtest. ThecostofPSAtestsiscoveredbyMedicareandmosthealthinsurance plans. Speaktoyourdoctororvisitalocalmedicalclinic. ProstateCancerinformationandsupportfromhundredsofotherguyswho havebeenwhereyouarenow,isonlyaclickaway,atwww.malecare.org Foundedin1998,MalecareCancerSupportisAmerica’sleadingprostatecancersurvivorsupport andadvocacynonprofitorganization.Learnmoreatwww.malecare.org Thisbookisfreetodistribute,onlywithoutcostandwithoutalteration. CopyrightMalecare2011‐2012AllRightsReserved.V1.3 Page198