MakingYourTreatmentSummaryandSurvivorshipCarePlanWorkforYouLeslieHeron,RN,BSN,MN,APRN,FNP-BC,NC-BC

9th AnnualPierceCountySurvivorshipDayAugust9,2017

Objectives

• LearnaboutTreatmentSummaryandSurvivorshipCarePlans

• Understandwhythisdocumentisrecommended forcancersurvivors

• LearnhowtouseaTreatmentSummaryandSurvivorshipCarePlantoadvocateforyourself

WhoareSurvivors?“…anyonewhohasbeendiagnosedwithcancerfromthetimeofdiagnosisthroughthebalanceofhisorherlife.”

AmericanCancerSocietydefinition

WhatisSurvivorship?Addressingtheuniqueneedsofsurvivorsafteractivetreatmentends

TransitiontoSurvivorship

WhyPlanforSurvivorship?• Therearemorepeoplesurvivingcancer– Screeningtestsforcancerarebetter– Earlierscreeningishappening–Moreeffectivetreatmentsareavailable

• Cancersurvivorsarelivinglonger– Bothchildhoodandadultsurvivorsarelivinglonglivesaftertreatmenthasbeencompleted

But…

…TherecanbeLongTermandLateEffectsMedicalProblems:

ü Heartdiseaseü Fatigueü Painü Osteoporosis/osteopeniaü Hypothyroidismü Prematuremenopauseü Pulmonaryfunctionü Lymphedemaü Urinaryincontinenceü Infertilityü Neurologicproblemsü GI(bowels,bloating,acidreflux)ü Dentalimpairmentsü Recurrenceü Riskof2nd cancersü Acceleratedaging

EmotionalandFunctionalConcerns:ü Memorylossü Restrictedsocialandphysical

activitiesü Fearofrecurrence/livingwith

uncertaintyü Muscleandjointstiffness,weakness,

crampsorpainü Sexualdysfunctionü Intimacy/relationshipissuesü Distressandworryü Jobloss/Joblockü Rolechangesathomeü Schoolconcernsü Insuranceproblemsü Financialconcernorcrisisü Sleepdisordersü Cognitiveprocessingdisruption

So,CancerSurvivorsSpokeUp!

IOMReportIdentifiedSurvivorshipNeeds:

1. Everysurvivorshouldreceiveatreatmentsummaryandcareplanattheendoftreatment.

2. Prevention,surveillanceanddetectionofnewandrecurrent cancers.

3. Prevention,surveillanceanddetectionforconsequences ofcanceranditstreatment.

4. Coordination betweenspecialistsandprimarycareproviderstoensurethatsurvivorhealthneedsaremet.

IOM: From Cancer Patient to Cancer Survivor: Lost In Transition (2006)

Standard3.3:SurvivorshipCarePlan• Providedtoyouattheendoftreatment

• PreparedbyOncologyteam• Contains– Diagnosisandalltreatments– Surveillanceandscreening– Actualandpotentiallateeffects

• Andwhattolookfor

– Healthylifestyleinformation– Yourhealthcareproviders– Resources

Thestandardrequiresthatthesurvivorsbe,“providedwithacomprehensivecaresummaryandfollow-upplanthatisclearlyandeffectivelyexplained.”

https://www.facs.org/publications/newsletters/coc-source/special-source/standard33

TreatmentSummaryGoal

• Increaseknowledgeofyourdiagnosisandthetreatmentyouhavereceived

• Assisttransitionbacktoprimarycareandotherhealthcareproviders

SurvivorshipCarePlanGoal• Increaseknowledgeforpatientandproviders

• Recommendhealthscreeningsandcancersurveillance

• Promoteahealthylifestyleandillnessprevention

WhatMightaTreatmentSummaryandCarePlan

LookLike?

DiagnosisandMedicalHistory

TreatmentSummary…

SurvivorshipCarePlan

Follow-UpPlan

Follow-UpPlan

Now…Let’sSeeHowaTreatmentSummaryandCarePlanCan

WorkforYOU!

Mike’sdentisthadbeenseeinghimforafewyears,andwassurprisedMikehadsomanynewcavitiesandrecedinggums.Mikebrushed,flossed,cameinfordentalvisitsregularly.WhatMike’sdentistdidn’tknowwasthatMikehadchemotherapyandradiationforprostatecanceraboutayearago.

MikecameinforaSurvivorshipClinicvisitandfinallyunderstoodwhatwasgoingon,andwhy!

WhenMikebroughthisTreatmentSummaryandCarePlantoadentalvisit,hisdentistwasabletocomeupwithabetterpreventativeplan,nowMikeiscominginforcleaningsevery4months.

Loishadcoloncancerlastyear.Shehasdonephysicaltherapyforthepastfewmonthstogetherstrengthbackaftersurgery,chemoandradiation.Shehasbeengettingstronger,butherlegsfeel“heavy”aftershetakesalongwalkorafterbeinginthecaralongtime

Loistriednotexercisingforafewdaysinarow,buthersymptomsdidn’tchange.Nowherpantsfeeltighteronherlegs.Whatisgoingon?

ShereadbackthroughherSurvivorshipCarePlanandtookitinwithhertoamedicalvisit.HernursepractitionerrealizedLoishadlymphedema!Loiswentbacktophysicaltherapytohavelymphedemamassageandtobefittedwithcompressionstockings.Sheisdoingherownmassagenowandisbacktoexercisingwithoutproblems.

KarlwastreatedinhisteensforHodgkinlymphoma,andnowisinhismid-40’sandhasbeenhealthyandwell.Hehasputonalittleweightandwantedtogetbackinshape,butfoundhewasfeelingmorefatiguedafterexercise.Hethoughtheshouldfeelbetterafterexercise!Hedidnothaveaprimarycareprovider,buthe’dheardaboutSurvivorshipClinicfromhissupportgroup.

AfterreviewinghisTreatmentSummary,KarlrealizedhehadbeentreatedwithDoxorubicin.Thischemotherapymayhaveputhimatriskforheartproblems,evenyearsaftertreatment.Hehasgottenintoseeaprimarycareproviderforaphysicalexamandbloodwork,andisscheduledforanechocardiogramtolook.

Sandrahadatransplant8yearsago,andshehadbeendoinggreat.Shegotinforroutinecheckups,hadbloodtestsdoneyearly,andhadroutinemammograms.Thenshestartedfeelingtired,andnoticedherhairwasgettingthinner.Thenherfatiguegotworseandhershouldersfeltachy.Shebegantoworrythathercancermayhavecomeback!

Whenshewentintoseeherprimarycareprovider,theylookedoverherTreatmentSummaryandCarePlantogether.Sandrahadbothchemotherapyandradiationduringtreatment.Herdoctorrealizedtheyhadn’tcheckedherbloodworkforthyroidhormonelevelswithheryearlylabslastyear.

Sandra’sexamandtestsallcamebacknormal,exceptherthyroidlabs.Shewasputonthyroidmedicationandisfeelinggreatagain.

• AskyourOncologyteamforaTreatmentSummaryandSurvivorshipCarePlanofyourown!

• AskifyourcancercenterhasaSurvivorshipClinic

• CometotheFredHutch/SCCASurvivorshipClinic

TreatmentSummary &CarePlans

Or…MakeYourOwnTreatmentSummary!• LIVESTRONGTM CarePlanwww.livestrongcareplan.org

– Patient-orientedtool– Comprehensiveindividualizedlistofrecommendationsspecificto

primarycancerdiagnosis&treatmentreceived– PoweredbyPennMedicine’sOncoLink

• JourneyForwardwww.journeyforward.org

– Providers&Patients– Collaborativeeffortof:

• NationalCoalitionforCancerSurvivorship• TheUCLACancerSurvivorshipCenter,Wellpoint,Inc.,Genentech

MakingYourCarePlan

Atreatmentsummaryandsurvivorshipplanarethepiecesthathavebeenmissinginmycaresincefinishingtreatment.

Asurvivorshipcareplanistheformerlymissingsteptohelpussurvivorsregainourdignityandconfidencemovingforwardwithaplanwithoureyesopen.

Aftermycancertreatment,IknewthereweretestsIneededandillnessIwasatanincreasedriskfor,butIdidn’tknowthespecifics.NowIknowexactlywhatIneedtodotobeashealthyaspossibleinthefuture.

Thankyou!