Download PDF here - Macmillan Cancer Support

More documents

Recommendations

Info

Access to treatmentDavid Cook, 52, was diagnosed with kidney cancer in 2004– he says it's more difficult for people with a rarer cancer toaccess information, support and treatmentFurther informationDavid CookDavid was awardeda Macmillan CancerChampion award in2010. This is given tovolunteers who haveused their experience ofcancer to help others.Kidney Cancer SupportNetworkwww.kidneycancersupportnetwork.co.ukRarer CancersFoundationwww.rarercancers.org.ukReferenceCancer Research UKwebsite. Kidney cancerstatistics. http://info.cancerresearchuk.org/cancerstats/types/kidney/uk-kidney-cancerstatistics(accessed 8August 2012).‘The biggestimpact ofthe postcodelottery is onrarer cancers’When David was first diagnosed,he didn’t know anything aboutkidney cancer.‘I found it difficult to get information.With more common types of cancer, thereis almost an overload of information, butfor kidney cancer there isn’t much at all.’Kidney cancer affects around 9,000people in the UK each year. [1] It is morecommon in men than women and incidenceincreases as people get older.David had surgery to remove his leftkidney, but there was no adjuvant therapyavailable at that time. He says the surgeonhe saw was ‘fantastic and positive’.Appealing for treatmentIn December 2006, two years after his firstdiagnosis, David was told that the cancerhad spread to his lungs and lymph nodes.His specialist wanted to prescribe himsorafenib (Nexavar ® ), a drug that had beenproven effective in treating advanced kidneycancer. However, his primary care trust(PCT) prohibited this, so David had to applyfor exceptional funding. His first applicationwas rejected, but he appealed and the PCToverturned its decision. In the meantime,David had gone three months withouttreatment. During this time, David’s wifediscovered that she also had cancer.Campaigning for changeIn a speech to an All Party ParliamentaryGroup on Cancer at the Houses ofParliament in 2009, David said, ‘You canimagine how devastating this was for myfamily. My children were burdened withthe knowledge that both of their parentshad cancer, and one was being deniedtreatment. Luckily, their mother is okayand I am still here.’David is a strong advocate of theCancer Drugs Fund and points out thatit has helped 11,400 people since it wasestablished last year. ‘However, there arestill areas of the UK where it is much harderto get approval for new cancer drugs. Thebiggest impact of the postcode lotteryis on rarer cancers.’Living with cancerBefore David won his appeal in 2007,he was told that he only had a year to live,for some of which he would be bedridden.Since that time, the cancer hasn't spreadsignificantly. David has also been takingpart in a trial for everolimus (Afinitor ® )since 2009.David admits that he has difficult days.‘I’ve had fantastic treatment, and supportfrom my family and work. But there arepsychological issues. Every three monthsI have to go for a CT scan and I neverknow what the result is going to be. A lotof the other people I’ve met with kidneycancer have now died or are in a very poorcondition. It’s difficult to come to terms withthe fact that, at some point, that’s going tobe me. But I do think that there’s nowherebetter than the NHS when you’re seriouslyill. And working with Macmillan hasbeen fantastic.'Related informationMacmillan has information aboutkidney cancer and the Cancer Drugs Fund.Order free from be.macmillan.org.ukor call 0800 500 800.24 Mac Voice Autumn 2012
Penile cancerSarah Henderson, Macmillan Urology Nurse Specialist,discusses this rare and devastating tumourPenile cancer affects about 400 meneach year in the UK. Although it ismainly seen in men over 60, 20% ofcases will be diagnosed in men under 40.Symptoms can vary widely from a small,reddened area on the glans, to a largefungating mass with enlarged groin lymphnodes. Diagnosis may be delayed eitherdue to the man not seeking help or lack ofknowledge from healthcare professionals.TreatmentTreatment can vary from topicalchemotherapy to a variety of surgicaltechniques. Radiotherapy to the penis israrely used as a primary treatment now.Treatments have changed dramaticallyin the last decade with penile preservingsurgery now being the most commonprimary management. Radical penectomymay be necessary for more advancedtumours. The first place this cancer willspread to is the groin lymph nodes, sostaging of lymph nodes is important.Specialist centresPenile cancer is managed in supra regionalcentres. There are about 10 such centresspread across the UK. The purpose behindthis is to consolidate expertise into specialistcentres where clinicians work in teamsthat see this problem on a regular basis.This unfortunately means that patientsmay have to travel long distances for theirtreatment. Management can be streamlinedto a certain degree if scans and outpatientappointments are booked on the same day.Treatment so far from home can beisolating and although hospital stays havebeen reduced, it is important to considerlocal accommodation for partners or familymembers. Travel and accommodation costscan also be significant so Macmillan Grantsand referral to a local benefits service canbe very helpful. Communication with thepatient’s local team is key to a smoothtransition of care.Subsequent oncological treatments, suchas chemotherapy or radiotherapy, are morelikely to be carried out closer to the patient’shome. There is a key oncologist in each ofthe referring centres who will coordinatethese treatments.Prognosis depends on the stage of thecancer and those with lymph nodes thathave extracapsular spread will have thepoorest chance of survival.SupportPsychological intervention is important formen affected by penile cancer and theirpartners. All penile cancer centres shouldhave access to psychological services.The effect of treatments for penile cancercan be significant and if more radicalsurgery is necessary it may impact not onlyon sexual function but urination as well.Sitting down to pass urine may have botha psychological and social impact.It is difficult to provide support groupsbecause of the nature of the disease andthe wide area from which patients travel.Patient surveys have shown that web-basedsupport is preferred. There are a coupleof online groups, including Macmillan’sOnline Community, and details of theseare provided at diagnosis. This method ofsupport is not suitable for everybody solocal cancer support centres may be helpful.This can be a devastating cancer, butgood communication and team work canimprove the patient experience.Further informationSarah HendersonMacmillan UrologyNurse SpecialistSt. George’s HealthcareNHS Trust, Londonsarah.henderson@stgeorges.nhs.uk020 8725 0393RelatedinformationMacmillan has a factsheet about penilecancer. Order free frombe.macmillan.org.uk or call 0800 500800. Visit Macmillan’sOnline Community atmacmillan.org.uk/communitywww.macmillan.org.uk/macvoice 25
Page 1 and 2: For Macmillan professionalsIssue 62
Page 3 and 4: EditorialRarer cancersA cancer may
Page 5 and 6: Survival variationsTwo separate rep
Page 7 and 8: NewsBoots and Macmillanbroaden loca
Page 9 and 10: NewsChanges to onlineinformation fo
Page 11 and 12: NewsDemonstrating impactHow Macmill
Page 13 and 14: delivery, such as ensuring complian
Page 15 and 16: Follow-up FeaturePiloting a nurse-l
Page 17: added benefit that someone trainedt
Page 21 and 22: Primary care Featurechronically ill
Page 23: In this section24 Access to treatme
Page 27 and 28: Hodgkin lymphomaTrish Hughes, Macmi

Download PDF here - Macmillan Cancer Support

Create successful ePaper yourself

Delete template?

Save as template?