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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