Download uveal melanoma - Melanoma Network of Canada

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.
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