THE SPECIALIST CENTRE FOR KIDNEY CANCER AT THE ROYAL FREE

CONTENT

Introduction 04

Specialist multi-disciplinary team clinic (smdt clinic) 07

Treatment options 09

Your key worker 11

Holistic assessment 11

Cancer counselling service 12

The macmillan cancer information and support centre 12

Macmillan benefits advisor 13

Complementary therapy 13

The interpreting service 13

How to get here 14

Additional information available 16

Questions you may wish to ask your specialist team 17

03

INTrOduCTION

The specialist centre for kidney cancer at the Royal Free is an expert centre which leads and coordinates the care of people with kidney cancer. Patients with a non-cancerous tumour will also be seen in the centre.

We recognise that the time after a cancer or tumour diagnosis will be a worrying one for you and your family. We hope this brochure will help you understand the treatment plan that you will follow after your diagnosis, as well as introduce the type of healthcare professionals you will meet along the way.

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The specialist centre has been created to lead and coordinate the care of people with kidney cancer across north central London and west Essex.

People with kidney cancer will benefit from:

• thededicatedandhighlyspecialisedservices available at the Royal Free

• acoordinatedpathwayfromdiagnosisthroughtotreatmentand aftercare

• supportfromoneandsometimestwo,dedicatedclinicalnursespecialistswhowillbewithyouthroughoutthepatientjourney.

We have a website that contains more detailedinformationaboutthecentreand treatments that are available: www.royalfree.nhs.uk/urology/kidneycancerservice

Supportisalsoavailablefromapatientnavigatorwhowilladviseyouabout:

• transport

• parking

• accommodationarrangements

• hospitalappointments

• andanyotheradministrationissues

tomakesureyourjourneytotheRoyalFreeandyourtimehereisassmoothand comfortable as possible.

Contact details for the patient navigator are:

Direct telephone: 020 7317 7779

Email: rfh.kidneycancer@nhs.net

(Ensurethisisplacedbelowthelastparagraphandnotunderthephotoascurrentlydisplayed)

THE KIdNEYS

Thekidneysaretwobeanshapedorgansaboutthesamesizeasafist.Theyarenear the middle of the back, one on either side of the spine.

Thekidneysarepartofthebodysystemcalledtheurinarysystem.Thissystemfilterswasteproductsoutofthebloodandmakesurine.

Urinedrainsfromeachkidney,throughatubecalledaureter,tothebladderwhereitisstored.Whenyou’rereadytopassurineitleavesthebodythroughanothertubecalledtheurethra.

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The kidney

Renal pelvis

Ureter

Right kidney

Right ureter

Bladder

Kidney cortex

Kidney medulla

Left kidney

Left ureter

Urethra

Bloodiscarriedtothekidneythroughabloodvesselcalledtherenalartery.Renalmeans‘todowiththekidney’.Afterthebloodhasbeenfilteredbythousandsoftinyfilterscallednephrons,ittravelsbacktotherestofthebodythroughtherenalvein.

Itisimportanttonotethatallnormalrenalfunctionscanbemaintainedbyonekidney. For example, a person who is born with only one kidney or who donates akidneyfororgantransplantationcanstillliveaperfectlyhealthylife.Similarly,akidneycancerpatientwhohasonekidneyremovedbysurgerywillnotnecessarilysufferanysignificantimpairmentofoverallrenalfunction.

SpECIAlIST MulTIdISCIplINArY TEAM ClINIC (SMdT ClINIC)

YouhavebeenreferredtothespecialistcentreforkidneycancerattheRoyalFreetodiscussyourtreatment.Dependingonyourtreatmentoptionsyoumaymeetsomeoralloftheteamatyourappointment(asurgeon,aradiologist,aclinicalnursespecialist(CNS)and/oranoncologist).TheclinicalnursespecialistwillbeyourmainpointofcontactthroughoutyourtreatmentattheRoyalFree.Thepatientnavigatorwillassistyouwithqueriesaboutgettingtotheappointment,andhelpwithchangingclinicappointmentsifrequired(tel:02073177779).

Youmayhavefurthertestsatthisappointmentandwillbeabletogetinformationaboutyouroptionsfortreatmentfromeachoftheappropriatespecialists.

Whereverpossiblewewillaimtodoyourpre-assessmenttestsforsurgeryatthisappointmentandagreeadateforyourtreatment.

Attheendofthisbrochureyouwillfindanexampleofquestionsthatyoumayfindusefultoaskatyourappointment.Youarerecommendedtowritedownandbringwithyouanyofyourconcernstodiscusswiththeteamattheappointmentoryoucancontacttheclinicalnursespecialistaftertheappointment–contactdetailsaregivenlaterinthisbrochure.

PLEASENOTEYOUSHOULDALLOW2–3HOURSFORYOURFIRSTAPPOINTMENT.Wewouldencourageyoutobringapartner,friendorrelativetothisappointment

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Specialist multidisciplinary team meeting Thisisaweeklyvideoconferencemeetingwhichlinksyourlocalhospitalandotherhospitalsites/specialistsfordiscussionaboutyourtreatment.Themeetingenablesallteammemberstodiscusseverynewpatientwitharenalcancerandwhereappropriate,agreestaging(anindicationofwherethecancerislocated)andplanfurtherinvestigationsand/ortreatments.Existingpatientsrequiringachangeoftreatmentarealsodiscussedatthesemeetings.

AnSMDTrecommendationismadeforeachnewpatient(orpatientsrequiringachangeoftreatment),andtheoptionsfortreatmentwillbediscussedwithyouattheclinic.

TheSMDTmayrecommendthatfurthertestsarenecessary,inwhichcaseyouwillbe contacted to explain the need for this.

Specialist multidisciplinary team (SMdT)

AttheRoyalFreeyouwillbelookedafterbyaspecialistmultidisciplinaryteam(SMDT).TheSMDTconsistsofdoctors,nurses,andcoordinatorswhoallhavespecialisttrainingandexperienceindiagnosing,treatingandsupportingpatients with kidney cancers.

TrEATMENT OpTIONSMoredetailedwritteninformationwillbegiventoyouwhenyouattendtheclinicbutthetypesoftreatmentoptions are described here:

SurgeryIs the most common treatment for a kidneycancerortumour.Itcanbeacureforanearlycancerandpartofa treatment for an advanced cancer. Removal of the entire kidney is called anephrectomy.Ifthetumourissmallthesurgeonwillremoveonlypartofthe kidney, a partial nephrectomy. It is possibletohavekeyholesurgerywhichis called a laparoscopic nephrectomy.

robotic assisted surgeryThisislaparoscopicsurgeryusingroboticassistancethroughthesmall keyhole incisions. The keyhole instrumentsandacameraallowingthesurgeontoseeinsideofyourabdomenare attached to the robotic arms. The daVincirobotwasintroducedtotheRoyal Free in 2014.

ThedaVinci®systemisusedextensivelythroughouttheUSandEurope,anditiscurrentlybeingusedinmanydifferentareasofsurgery.To date there have been 1.2 million operations performed with the robot.

Cryoablation Isatechniquethatdestroystissue,inthiscasethroughfreezing.Inordertoproducethefreeze,needlesareplacedintothekidney,usingimageguidance(forexampleultrasoundandCTscanning).Amixtureofgasesisthenusedtofreezeandthawthetipsof the needles.

Bothsurgeryandcryotherapyareperformedundergeneralanaesthetic.Youwillusuallyreceiveapre-assessmenttestfortheseproceduresduringyourfirstclinicappointmentoroccasionallybegivenanappointmentto attend for this assessment at a later date.

radiofrequency ablation (rFA) Uses heat from an electric probe to destroythetumour.Theprocedureisusuallyperformedbypassinganeedlethroughtheskinusingimageguidance(forexampleultrasound andCTscanning).

Following any of the above treatmentsyouwillbeinvitedback totheSMDTclinicattheRoyalFree tohaveacheck-upappointment

Theteamincludes:

Urologist(asurgeonwhospecialisesinkidneycancer)

Interventional radiologist (specialist doctorinnonsurgicaltreatment)

Clinical oncologist (specialist doctor in cancertreatmentssuchaschemo)

Radiologist (a specialist doctor who works withx-raysanddiagnosticscans)

Histocytopathologist (who looks at tissuesamplesandcellstodiagnosecancer)

Clinical nurse specialist, your key worker (aregisterednursewithspecialistqualificationsandskills)

Research nurses / research practitioners Specialistnursewholooksafterpatients in clinical trials

MDT coordinator (responsibleforensuringpatient names and details areprovidedfortheteamattheSMDTmeetingbyliaisingwithclinicalandadministrative teams across departments andreferringhospitals

Patient navigator (administrative staffwhoworktoensureappointmentsarescheduledappropriatelyandsupportpatientsinbookingandprovidinginformationaboutappointments)

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Iftheconsultantishappywithyourrecoveryhewillmakearrangementsforyoutohavethenextappointmentatyourlocalhospital.Allyourfutureappointments will be at the local hospital.Yourpointofcontactwillthenbetheclinicalnursespecialist atyourlocalhospital

Clinical trials Clinicaltrialsplayaveryimportantroleinhelpingsearchfornewandmoreeffective treatments as well as better waysofdiagnosing,screeningorpreventingadisease.Clinicaltrialsarethebestwaytofindoutwhetherornot a new treatment is better than the currentstandardtreatment.

Aclinicaltrialisamedicalresearch studyinvolvingpeople.Peopletakingpartintrialsarealwaysvolunteers.Trialsare done in all areas of medicine, not justcancer.Theycaninvolvetestingnewdrugsandcombinationsofdrugs,aswellasnewtechnologyandprocedures.

It is possible that there will be clinical trials thataresuitableforyou.Yourmedicalteamshoulddiscussthiswithyou.

BIO banking

Bloodortumoursamplesmaybeobtainedtoassistresearch.Youmaybeaskedtogiveyourpermissiontousesomeofyoursamplesforresearchinto cancer.

Immunotherapy Stimulatesthebody’sownimmunesystem to attack the cancer cells

Targeted therapies Thistreatmentusesdrugswhichtargetbloodvesselsandgrowthfactorsinthecancer cells.

Theseareusedtotreatkidneycancerthat has spread beyond the kidney. Theyhavesideeffectsandyourdoctorcangiveyoumoredetail.

Supportive and palliative care Isaboutprovidingsupportatallstagesofaperson’sexperiencewithcancer.Supportivecaremeanshelpingpatientsand their families cope with cancer and its treatment

YOur KEY wOrKEr

AllpatientsattendingtheSMDTclinicwill be appointed a key worker who isusuallytheclinicalnursespecialist(CNS).Yourkeyworkerwill:

• Supportyouandyourfamilyatallstagesduringyourillness

• Provideverbalandwritteninformationaboutyourconditionand treatment

• Co-ordinateyourcare

• Providehealtheducation

Yourkeyworkerwillworkcloselywiththeclinicalnursespecialistatyourlocalhospitaltoensurethingsgoassmoothlyaspossibleand provide better accessibility into the hospital as he or she can be contacted easily for help and advice.

Pleasecontactthekeyworkerifyouwishtodiscussanyaspectsofyourtreatment

HOlISTIC ASSESSMENT

Eachindividualhastheirownexperience of cancer and how theyfeelitaffectstheirlives.Beingdiagnosedwithcancercanmakeyoufeelmanydifferentemotionsandexperienceunpleasantphysicalsymptoms.Holisticneedsassessment(HNA)isatooltoidentifyareasofconcern and to develop a personalised care plan, with onward referrals madeasrequired.EffectiveHNAandcareplanningcanhelpustomeetyourindividualphysical,emotional,practical,familyandspiritualneedsin a timely and appropriate way. TheHNAwillbecarriedoutbytheclinicnursespecialistatthemostappropriatestageofyourtreatment.

Clinical nurse specialist contact details:

Clinical nurse specialist renal surgery:07935 450 617 07775 687823

Email: rfh.renalcancernursing@nhs.net

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CANCEr COuNSEllINg SErvICE

Whenyouorsomeoneclosetoyouhasatumourorcanceryoumayhave concerns,worries,confusionorfeelingsthatdistressyou.ThereisacounsellingserviceattheRoyalFreewhichyoucanasktobereferredto.

Youmightprefertoseeacounsellor/psychotherapistorpsychologistneareryourlocalhospital.YoucanaskyourCNStoreferyoutotheseservices.Theywillknowabouttheservicesavailable.

THE MACMIllAN CANCEr INFOrMATION ANd SuppOrT CENTrE

TheMacmillanCancerinformationandsupportcentreoffersuptodate,goodqualityandappropriateinformationabouteveryaspectofcancer.Ifyouhavequestionsaboutcanceryoucantalktoaninformationspecialistfacetofaceinarelaxed informal environment.

ThecentreismanagedbyaMacmillanCancerinformationspecialistwhoissupportedbytrainedvolunteers.

Thecentreisavailableforanyoneaffectedbyorwhowouldlikeinformationoncancer,includingrelativesandfriends.Ifyouareworriedyoumayhavecancerorareadjustingtolifeaftercancertreatment,theycanhelpyoufindtheinformationandsupportyouneed.

YoudonothavetobeapatientoftheRoyalFreetoaccessthisservice.

Thecentreislocatedonthegroundfloorintheoncologyout-patientsdepartment.

Ifyouareunabletogettothecentreyoucancontactthembyphoneon 02077940500ext31337orbyemailcancerinfo@royalfree.nhs.uk

MACMIllAN BENEFITS AdvISOr

Ifyouareaffectedbycancer,thelastthingyouwanttothinkaboutis money.Havingfinancialworrieswhiledealingwithacancerdiagnosiscan beverydifficult.TheMacmillanbenefitsadvisorisavailabletooffersupportandguidance.

Yourkeyworkercangiveyoufurtherinformationandreferyoutotheserviceif needed.

COMplEMENTArY THErApY

Allpatientscanaccessthemassageandreflexologyserviceatanytimeduringtreatment.Thenurseordoctorcanreferyoutothisservice.

THE INTErprETINg SErvICE

TheinterpretingserviceexistsforpatientswhospeaklittleornoEnglishandpatientswhoaredeafor‘hard-of-hearing’andrequirecommunicationsupport.Aface-to-faceinterpreterisrequiredforallnewappointmentsand24hours’noticeisrequired.

Pleasecontactthepatientnavigatoron02073177779whowillorganisethisforyou.

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HOw TO gET HErE

Werecommendthatyoucomebypublictransportifpossible,asparkingatthehospitalandinthelocalareaisverylimited.Youcandownloadlocalwalkingmapsaswellastransportmapsfromthewebsite.

Bicycleparkingisavailableoutsidetheaccidentandemergencyentranceonthelowergroundfloor.PayandDisplayparkingareasareavailablelocallybuttheseareverylimitedandfrequentlyfull.

TheKidneyandUrologyCentrecliniccanbefoundonthe3rdfloor(seebackofbrochureformap)

railHampsteadHeathstationisneartothehospitalandtrainservicesareoperatedbyLondonOverground.ThestationisaccessibletoOysterpayasyougousers.

undergroundBelsizeParktubestationontheNorthernLine.TheRoyalFreeisslightlyuphillforaround150metresfromthestation.

BusRoutes:24,46,168,268andC11

Travel informationFordetailedtravelinformationandrouteplanning,seethe

TransportforLondonjourneyplannerorcallTransportforLondonon 020 7222 1234.

Car parking at the royal FreeOurparkingfacilitiesareoperatedbyanumberplaterecognitionticketlesssystem.Youcanpayforparkingbycash,card,andphoneorbydownloadinganapp.

Payment points are located at both the Pond Street entrance and within Lawn Road car park.

Tel:03304007275andfollowtheinstructionsquotingsitenumber79499.Theappcanbedownloadedonwww.paybyphone.co.ukusingsitenumber79499.

Chargesare£3perhour(noparthours)–applicable24hoursaday,7daysaweek.

Alimitednumberofparkingspacesareavailableforkidneycancerpatientsandtheseareallocatedaccordingtoneed.Thepatientnavigatorcanprovidefurtheradviceonbookingoneofthesespaces.(Tel:02073177779)

Can you be dropped off?YescarscandropandcollectyoufromthehospitalentranceinPondStreetbuttheycannotdoubleparkorwaitthereformorethan20minutes.

Hospital transport Somepeopleareentitledtohospitaltransport.IfyouneedhospitaltransportonmedicalgroundsthisisusuallyorganisedbyyourGPforyourfirstvisit.Youarecollecteduptotwohoursbeforeyourappointmenttime,sopleasebereadyinplenty of time.

Whenyouarriveatyourclinic,tellthereceptionistthatyoucamebyhospitaltransportsothatwecanarrangeyourreturnjourney.Ifyouhaveanyproblems,callthehospital’stransportofficeon02074726572.

Can you claim expenses?Ifyoureceiveincomesupport,income-basedjobseeker’sallowance,pensioncredit,workingtaxcreditorchildtaxcredit,youcanclaimbackyourpublictransport fares to and from the hospital. This does not cover taxi services. Asktheclinictogiveyouafaresclaimform(whichtheyshouldfillinforyou).Taketheformtothehospital’scashierofficeinthefinancedepartmentonthelowergroundfloor.Pleasebringyourbenefitbookorothercurrentevidencethatyouarereceivingthebenefitandyourtraveltickets.

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AddITIONAl INFOrMATION AvAIlABlE

Kidney Cancer uKProvidesinformationandsupportforkidneycancerpatientsandtheircarers

www.kcuk.org08448707054

James whale Fund for Kidney Cancer Helpstoincreaseknowledgeandawarenessofkidneycancer

www.jameswhalefund.org08444745050

Kidney Cancer Support Network Helpspatients’familyandfriendstojointogetherforinformationandadvicewww.kidneycancersupportnetwork.co.uk01209890326

Cancer research uK www.cancerhelp.org.uk0808004040

Macmillan Cancer Support Informationonlivingwiththepractical,emotionalandfinancialeffectsofcancerwww.macmillan.org.uk0808808000

Marie Curie Cancer Care www.mariecurie.org.uk02072353325

london Cancerwww.londoncancer.org

QuESTIONS YOu MAY wISH TO ASK YOur SpECIAlIST TEAM

Whatisakidneytumour?

Whatisthedifferencebetweenabenigntumourandacanceroustumour?

WhatkindofkidneycancerdoIhave?

Doyouthinkmycancerhasspread?

Whatisthestageofmycancerandwhatdoesthatmean?

WhattreatmentchoicesdoIhave?

Whatdoyourecommendandwhy?

Whatrisksorsideeffectsaretheretothetreatmentsyousuggest?

Whattypeoffollow-upwillIneedaftertreatment?

ArethereanyclinicaltrialsIshouldthinkabout?

uuuuuuuuuu

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Belsize ParkTube

Florist

M&S

Le PainQuotidien

Hampstead Heath

(Overground)

To Heath

Royal Free Hospital

Fleet Road

Haverstock Hill

South End Green

Pon

d Street

E

C

BA

F

D

A

B

C

D

E

F

24

C11, 46

C11, 46, 168

C11, 46, 168

24 alight only

168 alight only

Bus stops

Ward 3 (East)

L3 Theatre

reception

L3 Recovery

ITU 3

Kidney and Urology Centre

Reception

Kidney and Urology Centre

SMDT Clinicand waiting area

royal Free Hospital third floor

How to get to the royal Free Hospital

Main lifts

Staff only lifts

Stairs

1918

Youmightalsowanttothinkaboutyourqualityoflifewhileyouarehavingtreatment.Willyouhavetotravelbackandforthtohospital?Whatarethesideeffectsoftreatment?Canthesideeffectsbetreated?

Alongwiththesesamplequestions,besuretowritedownsomeofyourown.

Forexample,youmightwanttoknowhowlongitmighttakeyoutorecoversothatyoucanplanyourworkschedule.

Oryoumightwanttoaskaboutsecondopinionsoraboutclinicaltrialsforwhichyoumayqualify.

Hospitals that are part of the specialist centre for renal cancer at the royal Free

Barnet and Chase Farm Hospitals NHS Trust

North Middlesex Hospital

The Princess Alexandra NHS Trust

Whittington NHS Trust

University College London Hospitals

Ifyouwouldlikealargeprintoraudioversionofthisinformation, please ask a member of staff.

LastreviewedApril2014