Open access follow up treatment for breast cancer… · can often detect breast cancer before it can be felt, either by you or a health care professional. For the majority of women,

Patient and Carer Information

Open access follow up treatment for breast cancer

Contents

Introduction 4

Future mammograms 5

Results of mammograms 5

The NHS Breast Screening Programme 5

Afterfiveyearsofannualfollowupmammograms 6

ContactingtheNHSBreastScreeningService 6

Your cancer medication 7

Possible side effects of hormone medication 7

Dexascansandbonehealth 8

Possible side effects of treatment 9

Bisphosphonatetreatment 10

Contraception 10

Ifbreastcancerreturns 10

Breast awareness 11

Signs and symptoms 11

Summaryofsymptoms 12

Breastreconstructionandprosthesis 13

Feelingsandemotions 13

The open access telephone service 13

Life after treatment 14

Welfareandbenefitsadvice 15

Useful contacts 16

Notes 20

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IntroductionTheopenaccessfollowupprogrammehasbeenspeciallydesignedbythebreastunittosupportyouwhenyouhavecompletedyourtreatment.Itisatypeoffollowupwhereyou,thepatient,areincontrol.Itmeansthatyournormalroutinewillnotbedisruptedbyregularhospitalappointments–insteadyoucanquicklygainaccesstothebreastcareteamandhospitalwhenyouneedto.Theprogrammeisbasedonevidenceshowingthattherearenoadvantagestoregular,fixedtimefollowupinhospitalforwellwomenaftertreatmentforbreastcancer(NICE2009).

Treatment summaryThetreatmentsummaryprovidesinformationaboutyourdiagnosisandtreatmentaswellashowyourfollowupcarewillbeorganised.Thisincludes:

• thedatesofyourfuturemammograms,ifneeded

• thedateswhichyoustartedandshouldcompleteyouranti-cancermedication

• thedatesofbonedensity(DEXA)scansifapplicabletoyou

• someofthecommonsideeffectsoftreatment

• ifbreastcancerreturns;signsandsymptomstoreporttousoryourGP

• beingbreastandbodyaware

• servicesavailabletopatientswhohavecompletedtreatment

• furtherhelpandsupportandhowtocontactthebreastcareteam.

This information is a summary of the group session and is for you to keep.

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Future mammogramsPeoplewhohavehadbreastcancerhaveasmallincreasedriskofdevelopingafurthercancerinthesamebreast(recurrence)oranewcancerintheotherbreast.Mammograms(breastx-rays)canoftendetectbreastcancerbeforeitcanbefelt,eitherbyyouorahealthcareprofessional.Forthemajorityofwomen,mammogramsaretherecommendedwayofcheckingforbreastcancer.Ourcurrentrecommendationsarethatyoushouldhaveannualmammogramsforfiveyearsfollowingyourdiagnosis, oruntilyoureachtheageatwhichtheNationalBreastScreeningProgrammestarts.ThesemammogramswillbeorganisedbyTheRoyalMarsden.Forasmallnumberofwomen,mammographymaynotbeappropriateandwewilldiscusstheotheroptionsifthisisthecase.

Results of mammogramsAfteryourmammogram,youwillreceiveyourresultsletterwithintwoweeks.Theresultsletterwillalsocontainthetimeanddateofyournextappointment.Forthisreasonitisimportanttomakesurethatthehospitalhasyourcorrectaddressandtelephonenumber.Ifyoudonotreceiveyourresultswithinonemonthofhavingyourmammogram,pleasecontactus.

Sometimes,afterhavingtreatmentforbreastcancer,mammogramsarenotaseasytoread;thereforewemayrecallyousowecancarryoutfurtherassessmentorinvestigations.Wewillcontactyoubytelephoneorbyletterifthisisthecase.

The NHS Breast Screening ProgrammeAscreeninginvitationissenteverythreeyearstoallwomenbetweentheagesof50and70years.Ageextensionsarecurrentlybeingrolledoutnationallytostartscreeningat47yearsandcontinueuntil73years.Ifyouhaverecentlyundergonetreatmentforbreastcancerandreceiveaninvitationtoattendforascreeningmammogramduringthetimeyouareattendingthehospital,pleasecanceltheappointmentwiththe

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NHSBreastScreeningUnit,tellingthemthatyouarereceivingregularmammogramsatthehospitalfollowingtreatmentforbreastcancer.

After five years of annual follow up mammogramsIf you are aged over 50 yearsAfterfiveyearsoffollowupatTheRoyalMarsdenyouwillbeinvitedtoandshouldattendtheNHSBreastScreeningProgramme.Youwillreceivemammogramseverythreeyearsthroughyourlocalscreeningservice.

If you are aged under 50 yearsAfterfiveyearsoffollowupwewillrecommendthatyoucontinuewithannualmammogramsatTheRoyalMarsdenuntilinvitedforroutinescreening.YouwillthenbeofferedmammogramseverythreeyearsthroughyourlocalNHSBreastScreeningservice.

If you are aged 70 years or overYoumaynotbeautomaticallycalledforroutinescreening.HoweveryoucancontinuetoreceivethreeyearlymammogramsundertheNHSBreastScreeningProgrammebyrequestinganappointmentanditisrecommendedthatyoudothis.PleasecontactyourlocalNHSBreastScreeningUnitorGPto arrangethis.

Contacting the NHS Breast Screening ServicePleasecontactyourlocalunit.Youcanfindyourlocalcentreonlineusingthefollowingwebaddress:www.nhs.uk/service-search/breast-screening-services/locationsearch/325

• ifyouwishtocancelappointments

• tocheckwhentheywillbescreeninginyourareafollowingyourfiveyearsofannualmammograms(orlongerifunder 50yearsofage)

• toself-referforbreastscreeningifover73yearsofage.

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Your cancer medication – hormone therapyPatientswithhormonesensitivecancersareprescribed anti-hormonetablets,alsoknownasendocrinetherapy. Anti-hormonetherapywillincludeTamoxifen,LetrozoleandothermedicationssuchasAnastrozoleandExemestane.Youwillbeonthesetabletsforfivetotenyears.OnceyouhavecompletedthefirstfiveyearswewillwritetoyouandyourGPandconfirmiftheprescriptionshouldstop,continueorbeswitched.

Yourtreatment summarywillconfirmthedateyoustartedyourhormonemedicationandthedateyouwillcompletefiveyearsofhormonetherapy.Ifyouhavenotheardfromusasyouneartheendofyourhormonetreatment,pleasecontacttheopenaccessnursepractitioner.

Somepatientswillchangetheirtabletsaftertwoorthreeyears.Forexample,ifyoubecomemenopausal(yourperiodsstop)theteamwillsometimesadvisethatyouareswitchedovertoanotheranti-hormonetreatment.Wewilltellyouifthisisthecase.

Youwillnothavetopayfortabletsasyouareentitledtofreeprescriptions.AmedicalexemptioncertificateisavailablefromyourGPsurgery,hospitalpharmacyorlocalchemist.

Treatmentsdochangeanddevelopallthetime.Iftherearemajorchangesinthewayweprescribehormonemedicationduringthetimeyouareonit,wewillwriteandtellyouaboutthisandwhatitmaymeanforyou.Youmaybeinvitedtoreturntoclinictodiscussthisfurther.

Possible side effects of hormone medicationYoumayexperiencesideeffectsthatareparticulartothedrugyouaretaking.Forexample,asaresultoftakingTamoxifentheliningofyourwombmaybecomethickerwhichcanthencauseyoutodevelopvaginaldischarge.Thisiscommonandnotserious.However,ifyourperiodshavestoppedandyouexperienceunexpectedvaginalbleeding,pleasecontacteitheryourGPortheopenaccessnursepractitioner.YourGPmayreferyoutoagynaecologist.

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AromataseinhibitorssuchasLetrozole,AnastrozoleandExemestanecansometimescausejointstiffnessandpain.Keepingasactiveaspossiblecanoftenhelptoreducethis.

Vaginaldrynessisacommonsideeffectofhormonemedication,inparticularthearomataseinhibitorssuchasLetrozole,ArimidexandExemestane.Thereareanumberoftreatmentsthatcanhelpwithvaginaldrynessincludingvaginalmoisturisersandlubricants.Thesecanbeprescribedbyadoctor,boughtinachemistororderedonline.

Ifyouareexperiencingsideeffectsofmedicationsuchasmenopausalsymptoms,jointacheorvaginaldryness,pleasecontactyouropenaccessnursepractitionerwhowillbeabletoofferfurthersupportandadvice.

DEXA scans and bone healthAfterthemenopauseasoestrogenlevelsfall,women’sbonesoftenbecomelessstrong.WhenyouaretakinganaromataseinhibitorsuchasLetrozole,Anastrozole(arimidex)orExemestane,thisprocessmaybeaccelerated.Youmayneedoneormorebonedensityscans(DEXAscans).Thesescanscantellusifyouaredevelopingbonethinningwhichcouldleadtoaconditioncalledosteoporosis.Yourtreatmentsummarywillstateiftheseareneeded.SometimestheyareorganisedbyTheRoyalMarsdenandsometimesbytheGP.Wewillletyouknowhowthesewillbebooked.

Ifyourperiodshavestoppedearlybecauseofyourtreatment,youmayalsoneedbonedensityscans.ThiscanalsobearrangedbyusormorecommonlybyyourGP.Yourtreatmentsummarywillstateifthesearerequired.Regularexercisesuchaswalking,alongwithadiethighincalcium,willhelptomaintainbonehealth.Duringyouropenaccessconsultationyouwillhavereceivedverbalandwritteninformationabouthowtolookafteryourbones.Pleasecontactyouropenaccessnursepractitionerifyourequirefurtherinformation.

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Possible side effects of treatmentAlltreatments(surgery,chemotherapy,radiotherapyandhormonetherapy)havethepossibilityofsomesideeffectsandsomeofthesecanlastlongerthanothers.Noteveryonewillexperiencesideeffectsandsomepatientsmayexperiencemoredifficultywiththemthanothers.Belowaresomeofthecommonsideeffectsyoumayexperience:

• breastdiscomfortortenderness

• menopausalrelatedsideeffects

• fatigue

• lymphoedema(swelling).

TheRoyalMarsdenhasarehabilitationservicewhichprovidesaccesstodietitians,physiotherapists,counsellors,psycho-sexualtherapistsandoccupationaltherapiststhathaveexperienceinhelpingpeoplemanagethesideeffectsoftreatment.Theopenaccessnursepractitionerwillbeabletodiscusstheseissueswithyouandarrangereferraltootherstaffasrequired.

Younger women

Youngerwomenmayhavedifferentneedsattheendoftreatmentsuchas:

• theimpactoftreatmentuponfertility

• becomingpregnantaftertreatment• issuesrelatedtobodyimageandsexualityandhowthis

mayimpactuponrelationships

• adviceaboutcontraception.

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Bisphosphonate treatmentSomeindividualswillberecommendedabisphosphonatetreatment.ThisisusuallygivenasadrugcalledZometaorZolendronicacidwhichisgivenasaninfusioneverysixmonthsforthreeyears.Ifyouroncologyteamhasrecommendedthis,theywillhavediscusseditwithyouintheclinicpriortoyoureceivingthisbooklet.Itisimportantthatyourdentalhealthisgoodandregulardentalchecksarerecommendedwhilstonthistreatment.

Thereisaseparatebookletavailablewhichoutlinesthetreatmentandsideeffectsinmoredetail.Bisphosphonates in early breast cancershouldbeavailablefromyourBreastCareNurseorthePALSHelpCentreatTheRoyalMarsdenatbothChelseaandSutton.

ContraceptionEventhoughyoumaynotbehavingregularperiods,youmaystillbeabletogetpregnant.Effectivecontraceptionisimportant.Dependingonthetypeofbreastcanceryouhad,youmaybeadvisedtoavoidhormonebasedcontraceptionsuchasthepill.YourGPorpracticenursewillbeabletorecommendalocalfamilyplanningcentrewhereyoucandiscussyourindividualneeds.Thegeneraladviceisthatyoushouldnotgetpregnantfortwoyearsfollowingtreatment.

If breast cancer returns – signs and symptomsItisimportanttoknowthatsurvivalratesforbreastcancerareimprovingallthetime(NICE2009)andthatmodernbreastcancertreatmentisusuallyverysuccessful.

However,breastcancercansometimesreturn.Thereisnomaximumtimespanastowhenthiscanhappenbutformostpeopletheriskreducesovertime.Itisimportantthatyouareawareofwhattolookoutforandwhattodoifyoubecomeconcernedaboutanything.Breastcancercanreturn:

• inthetreatedbreast(localrecurrence)

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• inthenearbyareaunderyourarm,aboveyourcollarbone orneckarea(regionalrecurrence)

• intheotherbreast(rarely)

• elsewhereinthebody(distantrecurrencealsoknownas metastaticbreastcancerorsecondarybreastcancer).

Forfurtherinformationonsurvivalrates,pleaseseetheCancerResearchUKwebsiteviawww.cancerresearchuk.org/health-professional/cancer-statistics/statistics-by-cancer-type/breast-cancer/survival

Breast awarenessBeingbreastawareisanimportantpartofcaringforyourbody.Itmeansgettingtoknowhowyourbreastslookandfeel,soyouknowwhatisnormalforyou.Youcanthenfeelmoreconfidentaboutnoticinganychanges.

Weknowthatafterhavingtreatmentforbreastcanceritcantakesometime(uptotwoyears)tobecomefamiliarwithyourtreatedbreast.However,thebetterweknowourbodies,thequickerwenoticewhatisnormalornotnormalforus.Ifsomethingfeelsunusualtoyou,pleasecontactthenursepractitioner.

Thereisnorightorwrongwaytogettoknowyourbreasts.Trytogetusedtothewayyourbreastslookandfeel.Youcandothisaroundonceamonth,inthebathorshower,whenusingsoaporbodylotion.Thereisnoneedtochangeyoureverydayroutine.Youcanfindleafletsandwebsiteswhichmaybehelpful;yourbreastcarenursecanrecommendsomeifyouwish.

Youknowbetterthananyonehowyourbreastslookandfeelnormally,soifyounoticeachange,contacttheopenaccessnursepractitioner.

Signs and symptomsEveryonehasachesandpain,butwhenyouhavehadbreastcancer,youmaybemoreawareofthemandmaybeconcernedthatanypainisrelatedtocancer.

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BelowisasummaryofsymptomsthatyoumaywishtoreporttoeithertheopenaccessnursepractitioneroryourGP,shouldtheydevelop.Ifyouexperienceanyofthesesymptomsitdoesnotnecessarilymeanthatyourcancerhasreturnedastheycanbecausedbymanyothercommonconditions,butitmaymeanthatyoushouldgetthemcheckedoutbythebreastteam.

Havingarecurrenceoranewcancercanbefrightening,butitisimportanttorememberthatifbreastcancerreturns,itcanusuallybetreated.

Summary of symptomsPleasecontactusifyouexperience:

• alumporaswellinginyourbreast,intheskinafteramastectomy,aboveyourcollarboneorintheneckarea,orunderyourarm

• anyskinchangesincludingdimpling,puckering,redness orraisedspotsonyourbreastormastectomyscar

• nippledischarge

• lymphedema(affectedsidearmswelling).

Orifyouexperience:

• anynew,ongoingpaininanypartofyourbody,especiallyinyourbackorhips,thatdoesnotimprovewithpainkillersandwhichisoftenworseatnight

• pinsandneedlesand/oralossofsensationorweaknessinyourarmsorlegs

• unexplainedweightlossandlossofappetite

• aconstantfeelingofnausea

• discomfortorswellingunderyourribsoracrossyourupperabdomen

• adrycoughorafeelingofbreathlessness

• severeheadaches,usuallyworseinthemorning.

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Breast reconstruction and prosthesisIfyouhavehadamastectomyanddecidedagainstreconstructionbutchangeyourmindatalaterdate,pleasecontactustodiscussdelayedreconstruction.Ifyouhavehadradiotherapy,wewilladviseyoutowaitatleastayearaftercompletionofradiotherapy.Insomecasessurgerycanbeofferedtocorrectunequalbreastsizes–thenursepractitionercanreferyoubacktoclinicifyouwishtodiscussthisfurther.Itisnaturalforbreasts(treatedanduntreated)tochangeovertime.Ifyouneedadviceaboutyourprosthesisorbrafittings,pleasecontactus.

Feelings and emotionsEveryonewillhavedifferentfeelingswhentheynolongerneedtoseetheirmedicalteamregularly.Somepeoplefeelrelievedthattheycanstarttogettheirlivesbacktonormal,othersmaybeconcernedaboutwhatcanhappeninthefutureandanxiousaboutlosingcontactwiththehospitalwheretheyreceivedtheirtreatment.Manyworryaboutthecancercomingback.Thisisverynormalandusuallytheseanxietieslessenwithtime.

Realisingthatthereisaproblemandgettinghelpisthemostimportantthingyoucando.Whileitisnormaltofeellowfromtimetotime,sometimesyoumayfindthewayyouarefeelingisinterferingwithyourenjoymentoflife.Ifyouarefindingitdifficulttocope,yournursepractitionermaybeabletoarrangeanappointmentforcounselling.ItmayalsohelptocontactalocalornationalsupportorganisationsuchasBreastCancerCareorMacmillanCancerSupport.Pleaseseetheircontactdetailsonpage17.

The open access telephone serviceOnceyouhaveenteredtheopenaccessfollowupprogramme,youshouldcalltheopenaccessnursepractitioneraboutanynewsymptomsthatyouareconcernedaboutorotherissuesyoumayhave.Theaimofthetelephoneserviceistoprovidehelpfuladviceandallowyoutohaverapidaccessbacktothebreastteamasrequired.

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Our commitment to you

Ifthenursepractitionerfeelsthesymptomsyouareexperiencingmayrepresentanewcancerdiagnosisorberelatedtoyourpreviouscancerdiagnosis,anappointmentwillbearrangedatoneofourclinicswithintwoweeksoftelephoningus.Ifnecessary,furtherinvestigationsmaybeorganisedandanoutpatientappointmentwillbearrangedtoreceivetheresults.Forpatientscontinuingtoexperiencesideeffectsoftreatment,thereareanumberofotherclinicsandsupportserviceswhichyoucanbereferredorsignpostedto.

Sometimes,verbaladvice(viathetelephoneservice)mayreplacetheneedforanoutpatientappointment.Inthesecases,awrittenletterwillbesenttoyouandyourGP.Wehopethatthisenhancesandpromotesyourabilitytocareforyourselfoncetreatmenthasbeencompletedandenablesyoutobenefitfromtheteam’sexpertiseasrequired.

ThetelephoneserviceisopenMondaytoFriday,9am-5pmandmaybeansweredbyaMacmillansupportworkeroranursepractitioner.Ifyourcallisnotansweredimmediatelypleaseleaveyourname,hospitalnumberandashortmessageandyourcallwillbereturnedbytheendoftheworkingday.

Life after treatmentOncetreatmentisover,peopleoftenwanttoknowwhattheycandotostayhealthy.Youmayhavequestionsaboutyourdiet,exerciseandgeneralwellbeingwhichwewouldbehappytoaddress.Someofthespecialistservicesweofferfocuson:

• stressmanagementandgeneralrelaxation

• counsellingandsupport

• lymphoedoma

• menopausalsideeffects,includingacupunctureforhotflushes

• fertilityissues

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• sexualityissues

• bodyimageissues

• Look good feel better workshops.

Spring into Action

Isaclinicorganisedbyphysiotherapistsanddietitianswhichoffersindividualadviceaboutmakingpositivechangestolevelsofphysicalactivityand/ordietaftercancertreatment.Ifyouwishtoattend,youcanself-refer.Pleaseseethecontactdetailsonpage16.TheclinictakesplaceatbothChelseaandSuttononalternateTuesdays.

Welfare and benefits adviceIfyouareexperiencingissueswithhousing,employment,immigration,financialorwelfarebenefits,youcangethelpbycontactingthewelfarerightsadvisor.Pleaseseecontactdetailsonpage17.

Ifthereareotherissueswhichconcernyouthatarenotofferedhere,pleasediscussthemwiththeopenaccessnursepractitionerwhowillbeabletoadviseyouonwheretogethelpandsupportandinformation.

Finally

Ifyouareworriedaboutsomethingtodowithyourbreastcancer,orthetreatmentthatyouhavehadforit,pleasecontactthenursepractitioner.Theywouldratherseeyouwithsomethingthatturnsouttobenothing,thanforyoutobeathomeworrying.Theyaretheretohelpyou,sopleasecallifyouhaveanyquestionsorconcerns.

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Useful contactsOpen access nurse practitionerSuttonandChelseaTel:02078118114Email:[email protected]

Macmillan one to one support workerSuttonandChelseaTel:02078118114Email:[email protected]

Breast care nursesSuttonTel:02086613027ChelseaTel:02078082813

Lymphoedema Service: SuttonTel:02086613504ChelseaTel:02078082981

Nutrition and Dietetic Service(including Spring into Action Clinic) SuttonTel:02086613066ChelseaTel:02078082814

Physiotherapy ServiceSuttonTel:02086613098ChelseaTel:02078082821

Occupational Therapy ServiceSuttonTel:02086613090ChelseaTel:02078082830

Prosthetics teamSuttonTel:02086613079ChelseaTel:02078082811

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OutpatientsSuttonTel:02086613430ChelseaTel:02078118194/2431

To change a mammogram appointmentSuttonTel:02086613589ChelseaTel:02078082467

Welfare rights advisorSuttonTel:02086426011ChelseaTel:02078082484

ChaplainsSuttonTel:02086613074ChelseaTel:02078082818Wecanalsoputyouintouchwithourhospitalmulti-faithchaplainswhowouldbehappytotalktoyouaboutanyspiritualissuesyoumayhave.

Look Good…..Feel Better WorkshopsTel:02078082949(availableforuptooneyearafterfinishingtreatment)Website:www.lookgoodfeelbetter.co.uk/workshops-near-me/

Breast Cancer CareFreeHelpline:08088006000Website:www.breastcancercare.org.uk

Macmillan Cancer SupportFreeHelpline:08088080000Website: www.macmillan.org.uk

The London Haven: Breast cancer support centreTel:02073840099Website:www.breastcancerhaven.org.uk/london

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Maggie’s: Cancer caring centresCharingCrossHospitalTel:02073861750TheRoyalMarsden,SuttonTel:02039823141Website: www.maggiescentres.org

The South East Cancer Help Centre Tel:02086680974Website:www.sechc.org.uk

Pauls Cancer Support Centre Tel:02079243924Website:www.pauls.org.uk

The Macmillan Butterfly CentreEpsomHospitalTel: 01372 735 456Website: www.epsom-sthelier.nhs.uk

NHS Cancer Screening ProgrammeTel:01142711060Email:[email protected]

The Jarvis Breast Screening UnitStoughtonRoadGuildfordTel:03332002062

SW London Breast ScreeningTheRoseCentreStGeorge’sHospitalLondonTel:02087254868

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West London Breast ScreeningCharingCrossHospitalTel:02037582024

The Royal Marsden SwitchboardSuttonTel:02086426011ChelseaTel:02073528171

The Royal Marsden Help Centre – PALS (PatientAdviceandLiaisonService)Tel:08007837176Email:[email protected]

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Notes and questions

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Notes and questions

Notes and questions

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References

Thisbookletisevidencebasedwherevertheappropriateevidenceisavailable,andrepresentsanaccumulationofexpertopinionandprofessionalinterpretation.

Detailsofthereferencesusedinwritingthisbookletareavailableonrequestfrom:

TheRoyalMarsdenHelpCentreFreephone:08007837176Email:[email protected]

Noconflictsofinterestweredeclaredintheproductionofthisbooklet

The patient information service is generously supported by The Royal Marsden Charity.royalmarsden.orgRegistered Charity No.1095197

Shouldyourequireinformationinanalternativeformat,pleasecontactTheRoyalMarsdenHelpCentre.

RevisedOctober2019.PlannedreviewOctober2022©TheRoyalMarsdenNHSFoundationTrustBR-1088-04