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A GUIDE TO UVEAL MELANOMA MELANOMA OF THE EYE: An information guide for patients newly diagnosed with uveal melanoma ACKNOWLEDGMENTS We would like to thank all the patients who shared their experiences and opinions with us. We would like to show our appreciation and gratitude to the following individuals who provided their expertise and review for the development of this booklet: • AnnetteCyr,Chair,MelanomaNetworkofCanada • AnthonyJoshua,MBBS,PHD,PrincessMargaretHospital • HatemKremaMD,OcularOncology,PrincessMargaretHospital, UniversityHealthNetwork • AnthonyB.Mak,PhD,MD2016Candidate,UniversityofToronto • E.RandSimpsonMD,OcularOncology,PrincessMargaretHospital, UniversityHealthNetwork • LeahIszakovitsMA,PMP,patient WewouldliketothankPrincessMargaretHospitalforitsfinancialsupport to make this educational material available for all the patients. The Melanoma Network of Canada (MNC) is a national, patient-led, charitable organization. The mission of the MNC is to provide melanoma patients and their caregivers with current and accurate information and services about the prevention and treatment of melanoma. Melanoma Network of Canada 1155 North Service Road W, Unit 11 Oakville, Ontario L6M 3E3 P: 905-901-5121 | www.melanomanetwork.ca 1 TABLE OF CONTENTS Quick facts .............................................................................................................. 3 Introduction Theeye .............................................................................................................. 4 The uvea ............................................................................................................ 5 Uveal melanoma................................................................................................. 5 Risk factors ........................................................................................................ 5 Detection Howisuvealmelanomadetected? .................................................................... 6 Howisuvealmelanomadiagnosed? .................................................................. 6 Whatistheprognosisifdiagnosedwithuvealmelanoma? ............................... 7 Howisuvealmelanomastaged? ........................................................................ 8 Treatment and management Whoisrecommendedfortreatment? ................................................................ 9 Whatarethetreatmentoptionsforuvealmelanoma?....................................... 9 Radiationtherapy .............................................................................................. 9 Brachytherapy – Plaque Radiotherapy ........................................................... 9 External Beam Radiation Therapy (EBRT) – Teletherapy............................... 10 Surgery ............................................................................................................ 11 Enucleation ................................................................................................. 11 Local tumour removal .................................................................................. 11 Genetic testing ................................................................................................ 12 Other therapies ............................................................................................... 12 Surveillance and management of metastases ..................................................... 13 Social support ....................................................................................................... 15 Questions to ask your healthcare team ............................................................... 16 Resources.............................................................................................................. 17 Glossary ................................................................................................................ 18 2 QUICK FACTS 3 • Uvealmelanomaisthemostcommoneyecancerinadults. • Althoughitiscalledmelanoma,itismuchrarerthanskinmelanoma, approximately200peoplearediagnosedinCanadaeachyear. • Treatmentoptionsincluderadiationtherapyandsurgery.Thereisno chemotherapyforuvealmelanoma. • Thereisnocureformetastaticuvealmelanoma;however,thereare treatment options. • Ifyouarediagnosedwithuvealmelanoma,youarenotalone,thereare supportprogramsandpeopletohelpyou! INTRODUCTION Thereareseveraldifferenttypesofeyecancer.Thisinformationguidefocuseson uveal melanoma. Melanomaisamalignanttumourofthemelanocytes.Melanocytesarepigmented orcolour–producingcellsfoundinvariouslocationsinthebodyincludingthe skin,hairandeyes.Melanomaoftheskin(orcutaneousmelanoma)ismuchmore commonandisverydistinctfrommelanomaoftheeye(oruvealmelanoma). Uvealmelanomaisalsoknownasprimaryintraocularmelanoma.Aninformation bookletonskinmelanomaentitled“Melanoma,WhatYouNeedtoKnow”is available from the Melanoma Network of Canada at www.melanomanetwork.ca. The eye: Theeyeisaballwithawallmadeofthreelayers: Theouterlayeristhewhitevisibleportioncalledthescleraandthereisaclear portionthatcoversthefrontoftheeyecalledthe“cornea”. Themiddlelayeriscalledtheuveaandiscomprisedoftheiris,whichisvisible throughthecornea,theciliarybodyandthechoroid,whichareundercoverofthe sclera.Amoredetailedpictureoftheuveaiscapturedinthediagramdirectlybelow. Theinnerlayeriscalledtheretina.Itiscomprisedofcellsthatcansenselightand transmit this information via the optic nerve to the brain for vision. 4 The uvea: Theuvea(oruvealtract)isthemiddlelayeroftheeye.Asmentioned,theuvea hasthreeparts:theiris,theciliarybodyandthechoroid. 1. Theirisprovidesaperson’seyecolourthatsurroundsthepupil. 2. Theciliarybodyisamusclethatcontrolsthesizeofthepupilandtheshape ofthelenstohelptheeyefocus. 3. Thechoroidisalayerofbloodvesselsthatprovidetheeyewithnutrients andoxygen. Thepreviousstructurescontainplentyofmelanocytes. Uveal melanoma: Uvealmelanomareferstomelanocytesoftheuveathatbecomecancerous. Thiscanoccurinanypartoftheuvea:theiris,theciliarybodyand/orthechoroid. Uvealmelanomacasesoccurnearly85%ofthetimeinthechoroid,another 10%intheciliarybodyandapproximately5%intheiris. Althoughuvealmelanoma(eye)andcutaneousmelanoma(skin)bothaffect melanocytes,theyaredistinctcancers.Uvealandcutaneousmelanomasare distinctinthattheyhavedifferentgeneticmutations,theybehavedifferently, andcutaneousmelanomaismuchmorecommon(nearly40timesmorecommon). Havinguvealmelanomadoesnotmeanyouwilldevelopcutaneousmelanoma or vice versa. Risk factors and prevention: The cause of uveal melanoma is unclear. Therefore, we do not know how to preventuvealmelanoma.Unlikeskinmelanoma,whichisoftencloselylinkedto UV radiation damage from the sun or other sources, there is no hard evidence tosupportcausalrelationship.However,therearefactorsthatwerelinkedto increased risk for uveal melanoma. These include: 1. Lighteyecolour,suchasblueorgreeneyes 2. Fair skin colour 3. Beingolderinage.Themedianageatdiagnosisis55yearsold. Although research studies have found an association with these factors, uveal melanomacanoccurinanypersonregardlessofage,genderorrace. 5 DETECTION How is uveal melanoma detected? Apersonwithuvealmelanomamayhavenosymptomsandthetumourcan bediscoveredduringroutineeyeexam,oritmayproducesomesymptoms. Forapersonexperiencingsymptoms,thesemayinclude: • Visionchange(e.g.blurredvision,flashinglights,unexpectedseeingof shadows,seeingfloatingspots,lossofperipheralvision) • Eyepain • Eyeredness Thesesymptomsaresimilartomanyothereyeconditions,suchascataractsand glaucoma,andareNOTspecifictouvealmelanoma.Ophthalmicexamination shouldbecarriedoutbyaspecialisttodiagnoseorruleoutthepresenceof melanoma. Apersonwithmelanomaintheirismaynoticechangesintheirisaspresenceof a growth, or changes in iris colour and changes in the size and shape of the pupil. How is uveal melanoma diagnosed? ThereisNOformalscreeningprogramforuvealmelanoma.Routineeyeexamsare thebestoptionforidentifyingpotentialissues. Eyeexam:Aneyeexamisperformedbyanoptometristoranophthalmologistand isapainlessprocedure.Theoutsideandinsideoftheeyeareexaminedforany abnormalities.Specialeyedropsthatdilatethepupilmaybeusedtohelpseethe insideoftheeye.Adiagnosisofuvealmelanomacansometimesbemadebyan eyeexamalone. PHOTOGRAPHY:Differenttypesofspecializedphotographsareusedtotake picturesoftheoutsideandinsideoftheeyeandcanhelpwiththediagnosisof eyeconditions,suchasuvealmelanoma.Also,bycomparingphotographsbefore and after treatment, photographs can also help determine whether the treatment deliverediseffective. 6 ULTRASONOGRAPHY:Ultrasonographyuseshighfrequencysoundwavestohelp seetheinsideoftheeye.Anaestheticeyedropsmaybeusedtonumbtheeyeso thatanultrasoundprobecanbeplacedontheeye’ssurface.Ultrasonographycan be used to determine the tumour size, shape and location. TRANSILLUMINATION:Transilluminationusesalightthatisplacedontheeye surfacetoexamineeyestructuresforanygrossabnormality. FLUORESCEIN ANGIOGRAPHY:Fluoresceinangiographyisusedtoseehowthe bloodisflowingintheeyeandtoseethebloodvessels.Afluorescentdyecalled fluoresceinisinjectedintoanarmvein,andthedyetravelstotheeyeinjustafew seconds.Aspecialeyeinstrumentcandetectthisfluorescencetohelpusseeif thereisanydamagetotheeyebloodvessels. RECENT IMAGING TECHNIQUES:TheseincludeOpticalCoherenceTomography (OCT),InfraredFundusPhotography,IndocyanineGreenAngiography(ICG),and FundusAutofluorescence.Theyaremodernsensitivetechniquestoimagesubtle changesinthetumourandnearbystructures. BLOOD TESTS:Abloodsamplemaybetakentodeterminehowwellorgansin yourbody,suchastheliver,areworking.Analyzingthebloodmayhelpdetermine whether the tumour has spread to the liver. SCANS:X-raysallowsvisualizingofinternalbodystructures.A3DX-raycalled ComputedTomography(orCT)maybetakenofcertainpartsofthebodytosee ifthereisanyspreading(ormetastasis)oftheuvealmelanomatumour.A2D X-rayofthechestmaybetakenasanalternativetoaCTscan.Magnetic ResonanceImaging(MRI)mayalsobeusedfora3Dimageanditdoesnotuse radiation, but takes longer than a CT. BIOPSY: Abiopsyisawaytogetasampleofthetumourcells,usuallybyusing afineneedle.Itistypicallynotperformedforuvealmelanomadiagnosisasother testsareusuallyenoughtomakeadiagnosis.Abiopsymaybeperformedsoitcan beanalyzedbyamedicalgeneticisttostudythetumour’sDNA.Thisinformation canbeusefulfordeterminingsurvivalprognosisofthepatientandhis/her eligibilityforclinicaltrials. What is the prognosis if diagnosed with uveal melanoma? Prognosisisatermusedtohelppredictthelikelyoutcomeofapatientwith a health condition. Prognosis can refer to the likelihood of a patient surviving after diagnosis of a tumour. There are a number of factors that can help determine the prognosis for a patient with uveal melanoma. The most helpful factors to determine prognosis are the tumour’s size, the tumour’s location and genetic testing. 1) Tumour size: The larger the tumour base and height, the less favourable the prognosis. 7 2) Tumourlocation:Irismelanomashaveabettersurvivalprognosisthanciliary bodymelanoma.Theprognosisforchoroidalmelanomasisinbetweenirisand ciliarybodymelanomas. 3) Spreading:Atumourspreadingoutsideoftheeyewallortootherpartsofthe bodyhasaworseprognosis. 4) Returnofthetumour:Sometimesthetumourcanreturnaftertreatment.This is called relapse or recurrence. This is associated with a worse prognosis as thetumourmaynolongerrespondtotreatmentandhasbeenshowntohave an increased likelihood of spreading. 5) Geneticfactors:Thisisthemostimportantdeterminantofsurvivability chancesinuvealmelanoma.ChangesintheDNAandchangesinspecific tumourgenesmayhavearoleinprognosisandcanbedeterminedbygenetic testing.Abiopsy(asampleofthetumourtakenusingafineneedle)is requiredtodogenetictesting.Ifyouareinterestedinexploringthispossibility andtodeterminewhetheryoumaybeacandidateforgenetictesting,please speakwithyourocularoncologist. 6) The patient: The patient’s age, general health status and other medical conditionsallplayaroleinprognosis.Thiscanbediscussedwithyourdoctor. The outcome regarding vision: Factors that may affect vision after treatment include: 1) Tumour size: A larger tumour increases the risk of vision loss. 2) Tumour location: A tumour closer to the optic disk or macula increases the risk of vision loss. 3) Othermedicalconditions:Othermedicalconditions,suchascertaineye conditionsanddiabetes,uncontrolledhypertensionincreasetheriskof vision loss. How is uveal melanoma staged? Therehasbeenseveralcategorizationsystemsofuvealmelanomaaccordingto theirdimensions,cellulartypeorgeneticdefects,andtheirlinktothepotential forspreadoutsidetheeye. The current most practical categorization is the TNM staging. Stage: Uvealmelanomastageisdescribedas“TNM”,whichstandsforTumour,Node and Metastasis. Tumour refers to the tumour size and whether it has invaded neighbouring tissues. Node refers to whether cancer has or has not spread to lymphnodes(organsinthelymphaticsystemthatcontaincollectionsofimmune cells). Metastasis refers to whether cancer has spread to distant sites. TNMisastagingsystemthatcanindicateprognosisforthepatient.TheTNMofan individual patient can be complex to explain and it is advised that patients discuss the details of their TNM stage with their ocular oncologist. 8 TREATMENT AND MANAGEMENT Who is recommended for treatment? Treatmentisnotalwaysrecommendedforpatientsdiagnosedwithuveal melanomaanddependsonmanyfactors,includingthelocationandsizeofthe tumour and a patient’s overall health. For example, watchful waiting and close monitoringmayberecommendedforanelderlychronicallyillpatientwhodoes nothaveanysymptomsandhasasmallsizedtumour.Otherwise,uvealmelanoma shouldbepromptlytreated. What are the treatment options for uveal melanoma? Thetreatmentoptionsforuvealmelanomamayincluderadiationtherapyor surgery.Somepatientswillreceivebothradiationtherapyandsurgery. 1. RADIATION THERAPY Radiation is used to kill tumour cells. There are two main forms of radiationtherapytotreatuveal melanoma:Brachytherapy(or PlaqueTherapy)andExternal BeamRadiationTherapy(EBRT) (orTeletherapy).Brachytherapy usesaplaquethatisplaced directlyontheeye.InEBRT,a machine delivers the radiation treatmentfromoutsidetheeye. (i) Brachytherapy or “Plaque Therapy”isthemostcommonform ofradiationtherapyusedandismost widelyavailable. Brachytherapyisusedtodeliverradiation thatisconfinedtothetumour.Thereare varioustypesofradioactiveplaqueswith 9 Image source: University of Chicago Medicine © 2012 Terese Winslow LLC differentradioactiveseedsthatcanbeusedforBrachytherapy.Eachtypeofseed differsonitsabilitytopenetratethetissue.Theplaquewillbephysicallyplaced ontheeyetobeclosetothetumour.Thisrequiresanoperationtopositionthe plaqueontheeye.Treatmentcanlastuptooneweekandwillrequireasecond operationtoremovetheplaque. Brachytherapymaynotbeusedwhenthetumourisveryclosetotheopticdisc, which is where part of the optic nerve (the nerve which allows us to see) is situated,andTeletherapymaybeusedinstead.Brachytherapyisalsonotused ontumoursthataretoobig(usuallygreaterthan12mmthick)becausethe radiationcanonlypenetratesofar.SinceBrachytherapyisveryprecise,many partsoftheeyewillremainunaffectedwhilethelocalizedradiationtreatment will treat the tumor. AlthoughBrachytherapyisanexcellenttreatmentformostuvealmelanoma patients,itmayhavesomeconsequencesonyourtreatedeye.Theriskofthese consequencesdependsuponthesizeandlocationoftheuvealmelanomainside theeye,aswellasthetypeofradioactiveplaqueandtheradiationdoseduring treatment.Possiblesideeffectsare: • Radiationretinopathy–damagetovesselsthatsupplybloodtotheretina. This will result in some level of vision loss. • Opticneuropathy–damagetothenervethatallowsthepersontosee. • Othercomplications–increasedriskforcataracts,higheyepressure,internal bleedingoftheeyeandrarely,necrosisofeyetissue. • Long-termcomplications–poorervision. (ii) External Beam Radiation Therapy (EBRT) isalsoknownasTeletherapywhichinclude charged particle irradiation (e.g. Proton BeamRadiotherapy),Stereotactic Radiotherapy,orGammaKnife. DifferenttypesofEBRTisonly available at certain treatment centres in Canada. Image source: Ohio State University EBRTusesamachinethat delivers a beam of radiation to the affectedpartoftheeyethrough thefrontoftheeyeonly.Incase ofprotonbeamradiotherapy,an eyeoperationmayberequiredto place metal clips or tags to help themachineknowexactlywhere to deliver the beam of radiation. 10 EBRTisusedtotreatpatientswithmediumtolargesizedtumoursneartheoptic disc,whereplaquecannotbeplacedtocovertheentiretumourbasebecauseof thephysicalobstructionfromtheopticnerve.ComplicationsofEBRTareshared withthoseofplaqueradiotherapy,buttheremayberelativelyhigherratesincase ofStereotacticRadiotherapy.However,thislargelydependsontumourfactors, suchasitslocationandsize,andpossiblythedoseofradiationreceived. 2. SURGERY Surgical removal of the tumour depends on factors such as how fast the tumour is growing and the location of the tumour. Therearetwomainformsofsurgerytotreatuvealmelanoma: REMOVAL OF THE EYE (ENUCLEATION): Removaloftheeyeisalsoknownas enucleation.Enucleationisconsideredincaseswhereradiationtherapymaybe insufficienttotreatthetumour,suchaswhenthesizeoftheuvealmelanomais particularlylarge,whenthetumourhassignificantlocalspreadingbeyondthe whiteportionoftheeye(thesclera)and/orapainfuleyeduetoaconditioncalled neovascular glaucoma. Aftertheeyesocketishealed,anartificialeye(orprosthesis)canbecustomized. Thiscustomizationprocessrequiresamoldtobetakenfromtheeyesocketand willtakeseveralweekstocreate.Whenready,theartificialeyeisfittedtothe patientandshouldlookveryrealisticandhavesomemovement.Oncetheeye socketiscompletelyhealed,apersonlivingwithanartificialeyecandomost normal things. It is recommended that goggles be worn during water sports and snow sports. LOCAL TUMOUR REMOVAL: Local removal of the uveal melanoma tumour maybeusedonlyinveryspecificcases,suchaspatientswhoareunableto undergobrachytherapyanddonotwishtoundergoenucleation.Thislimitation isduetotheneedforhighlyskilledsurgicalexpertise,aswellasthenumberof complicationsassociatedwiththissurgery,whichcanaffecttheretinaandcause internalbleedingoftheeye. 11 3. GENETIC TESTING Eachcellinthehumanbodycontainsetofinstructions(genes);thesegenesare storedinstructurescalledchromosomes.Healthycellshavetwocopiesofeach chromosome. Cells that are abnormal often show changes in these chromosomes. Theseabnormalcellsmultiplyatahigherrateandareconsideredtobecancercells. One of the most important indicators of poor prognosis in uveal melanoma is loss ofchromosome3(monosomy3).Metastaticdiseasedevelopsalmostexclusively inpatientswiththisgeneticabnormality.Otherchromosomesthatcanbealtered inuvealmelanomatumorcellsarechromosomes1,6&8. Approximately50%ofthesetumorcellswillshowchromosomalabnormalities; thesetypesoftumorcellshaveahighrisktospread(metastasize)outsideof theeye.Tumorcellsthatshownormalchromosomenumbershaveaverylow risk to metastasize. Whilethesechromosomechangesaregeneticchanges,theyarenotinherited (passedthroughthefamily).Thesechromosomechangesoccurbychancein thetumorcelloftheeye.Theyarenotpresentinanyotherpartsofthebody, specificallytheeggorspermcells,andthereforecannotbepassedontochildren. Genetictestingofuvealmelanomatumorcellsisperformedbyobtainingasample ofcellsfromtheaffectedeye.Thiscanbedoneatthetimeofplaqueradiation therapyortakenfromaremovedeye.Thissampleisperformedbyyoursurgeon andsentdirectlytothelaboratory. Itiswelldocumentedthatbiopsiestakenfromtheeyeforgeneticanalysiscontain bothhealthyandtumorcells.Forthisreasonasecondtestisperformedtoconfirm theaccuracybyprovingthatthecellsanalyzedareindeedtumorcellsandnot healthycellsthatmayhavebeeninthesample. 4. OTHER THERAPIES Othertherapiestotreatuvealmelanomaexist,butarenotascommonlyused. Theyincludephotocoagulation,transpupillarythermotherapyandphotodynamic therapy.Speakwithyourocularoncologisttolearnmoreaboutthesetherapies. 12 SURVEILLANCE AND MANAGEMENT OF METASTASES Spreadingofcancercellsthroughbloodorthelymphaticsystemtoanotherpart ofthebodyiscalledmetastasis.Uvealmelanomacanspreadtolocalstructures besidetheeye(knownasextraocularextension),suchastheopticnerve.Uveal melanoma can also metastasize through the blood and develop in the liver, lungs, bones and under the skin. Post primary treatment follow-up and surveillance: Uvealmelanomametastasesmaypresentyearsaftertheprimarytumourhas beentreated.Apatientwhoreceivestreatment(e.g.brachytherapy,EBRT,or enucleation) can still get metastases from the tumour cells that escaped from theeyetothebodyPRIORtotreatment. Almost50%ofpatientswithuvealmelanomawilldevelopmetastaseswithin 15yearsofbeinginitiallydiagnosed. 2%ofpatientsatthetimeofinitialuvealmelanomadiagnosiswouldshowan evidenceofmetastases.Adiagnosisofuvealmelanomametastasishasaverypoor prognosisand,unfortunately,hasahighrateofmortality. Thereareseveralapproachestosurveillanceformetastases.Becausemetastases usuallyoccurintheliverandinthelung,teststhatareperformedarefocusedon theseorgans.Thesetestsareperformedevery6-12monthsandcancontinuefor manyyearsordecades.However,therearenostandardguidelinesorapproaches for surveillance as there is no clear consensus amongst experts. 13 • Bloodtests–todeterminehowtheliverisfunctioning. • Imagingtests–ultrasoundtomonitortheliverandachestX-raytomonitor thelung.SomepeoplereceiveComputedTomography(CT)orMagnetic Resonance Imaging (MRI) scans. • Physicalexam–todetectissues. • Recently,genestudies,byaneedlebiopsyfromthetumourbeforetreatment, canpredictwithhighaccuracythepotentialtodevelopmetastaseseventually. Management of metastases: Although these surveillance measures can indeed detect uveal melanoma metastases earlier, there are limited treatment options for patients with metastases. The development of metastases is a serious complication of this typeofmelanomaandgenerallylimitspatientsurvival,althoughtreatments are improving. Treatmentoptionsformetastasesispresentlyexperimentalandinvestigational, whichmeansthattheyarebeingstudiedinaclinicaltrials.Someofthese treatmentoptionsmayincludechemotherapy,immunotherapyandtargeted therapy. CHEMOTHERAPYistheuseofchemicalstotreatcancer.Atrialofchemotherapy maybeusedonlyinpatientswithmetastases.Thereiscurrentlynooptimal chemotherapyapproachtotreatmetastases.Thismeansthatthereareanumber ofclinicaltrialsthatareinvestigatingwhichchemotherapyagent,eitherused aloneorincombinationwithotheragents,maybeeffectiveintreatingmetastases. TARGETED THERAPIESistheuseofdrugstospecificallystopdifferent“engines” of cancer cells from continuing to signal to the cells to reproduce and grow. Studiesontargetedtherapiesforuvealmelanomasometimesalsousechemotherapy. IMMUNOTHERAPIESistheuseofpartsofthepatient’simmunesystemtoattack the cancer. Patients can speak with their oncologist about potential opportunities to participate in clinical trials. 14 SOCIAL SUPPORT Adiagnosisofuvealmelanomaandcanceringeneralisoftenfilledwithemotion andanxiety.Itiscommonforpeopletobeupset,scaredandangry.Resourcesare availabletosupportyou,theyinclude: 15 • The Melanoma Network of Canada (www.melanomanetwork.ca) – UM online forum where ocular melanoma patients across Canada or their caregivers can talk with other UM patients and caregivers from around the world. • Social Media – Connect with the Melanoma Network of Canada on Facebook, TwitterandYouTube! • The Melanoma Network of Canada ‘Within Reach’ Peer Support Buddy Program–thisprogramprovidesnewlydiagnosedmelanomapatientswith non-professional,emotionalsupportfromsomeonewhohas“beenthere”. Formoreinformationonbecominginvolved,orifyouwouldliketorequest abuddyforyourself,pleasecontactMNCat905-901-5121. • Melanoma Research Foundation (MRF) (www.melanoma.org) – Cure OM patient online bulletin board where ocular melanoma patients, caregivers and their loved ones can talk with other OM patients and caregivers from around the world. QUESTIONS TO ASK YOUR HEALTHCARE TEAM1 About disease and treatment • WhattypeofcancerdoIhave? • Whatstageismycancer? • Whatarethepros,consandsideeffectsofmytreatmentoptions? • Whataretheexpectedsurvivalrateswiththesetreatments? • Willreceivingthesetreatmentspreventmefromreceivingadifferenttype oftreatmentinthefutureifIneedit? • Arethereanymoreteststhatneedtobedonebeforestartingtreatment? • Willtherebeteststodeterminehowmydiseaserespondstothetreatment? • Howoftenwillthesetestsbedoneduringandaftertreatment? • Willyouchangemytreatmentifitdoesnotappeartobeworking? • Howlongwillthetreatmentlast? • HowoftenwillIseeyouduringandaftertreatment? • Whatotherservicesareavailabletohelpmeandmyfamilycopewiththe disease? About prognosis and survival • Doyouexpectthesetreatmentstocuremycancer?Ifnot,whatisthegoal ofthistherapy? • Whatistheusuallifeexpectancyforthistypeofcancer? • Whatarethebestandworstcasescenarios? 1 Questions taken from “Questions you may ask” under “Your first appointment” from the Princess Margaret Cancer Centre, the University Health Network (www.theprincessmargaret.ca) 16 RESOURCES EYE PLAQUE PATIENT INFORMATION BOOKLET is a booklet explaining one of thetreatmentsforeyecancer. (http://www.theprincessmargaret.ca/en/PatientsFamilies/library/ CancerInformation/Brochures/SurgicalOncology/PatientHandouts/Eye_Plaque.pdf) EYE CANCER NETWORKisadedicatededucationsiteforpeoplewitheye tumoursandtheirfriendsandfamilies.(http://www.eyecancer.com/) LOST EYEprovidessupportanddiscussionforpeoplewhohavelostaneye. (http://losteye.com/) BASCOM PALMER EYE INSTITUTEhasinformationaboutdifferenteyeconditions, includingcancer.(http://bascompalmer.org/) NATIONAL EYE INSTITUTEhasinformationabouteyehealthanddiseases,aswell asdiagramsoftheinsideoftheeye.(http://www.nei.nih.gov/) IMPACT GENETICS provides genetic diagnostics for uveal melanoma and other rarediseases.(http://impactgenetics.com/) 17 GLOSSARY Brachytherapy:Usesradioactivematerialinsideyourbodytotreatcancer. Cancer:Abnormalcellsthatcandivideuncontrollably,invadenormaltissues andspreadthroughoutthebody. Choroid:Apartofthemiddlelayeroftheeyebetweenthesclera(thewhite partoftheeye)andtheretina.Ithaslayersofbloodvesselsthatsupply nutrientstopartsoftheeye. Ciliary body:Locatedbehindtheirisandproducesaclearfluidinthefront oftheeye,aswellasassistingtheeyewithfocusingatdifferentdistances (i.e. accommodation). Computed Tomography (CT):UseofX-raystoseeintothebody. Cutaneous: Means that it is related to the skin. Enucleation:Theremovaloftheeye. External Beam Radiation Therapy (EBRT):Usesradiationoutsideofthebody to treat cancer. Iris:Thecolouredpartoftheeyethatisreferredtoaperson’seyecolour. Magnetic Resonance Imaging (MRI): Use of radio waves and powerful magnets toseeintothebody. Melanocytes: Skin cells that produce a dark pigment called melanin, which is responsible for a person’s skin colour. Melanoma:Acancerofmelanocytes. Metastases: Spreading of cancer. Ocular oncologist:Adoctorwhospecializesineyecancers. Oncologist: A doctor who specializes in cancer. Ophthalmologist:Adoctorwhospecializesintheeyeandisamedicaldoctor(MD). Optometrist:Ahealthcareprofessionalwhospecializesintheeyeandisadoctor ofoptometry(OD). Plaques:Tinyplates. Retina:Theinnersurfaceoftheeyethatsenseslight. Tumour: A tissue mass made from an abnormal growth of cells. Ultrasound:Usessoundwavestoseeinsidethebody. Uvea or uveal tract:Themiddlelayeroftheeyethatincludestheiris,theciliary bodyandthechoroid. 18 Melanoma Network of Canada 1155 North Service Road W, Unit 11 Oakville, Ontario L6M 3E3 P: 905-901-5121 | www.melanomanetwork.ca Copyright© 2015 Melanoma Network of Canada