Access to treatment

Autumn 2012

David Cook, 52, was diagnosed with kidney cancer in 2004 – he says it's more difficult for people with a rarer cancer to access information, support and treatment.

 

When David was first diagnosed, he didn’t know anything about kidney cancer.

 

‘I found it difficult to get information. With more common types of cancer, there is almost an overload of information, but for kidney cancer there isn’t much at all.’

 

Kidney cancer affects around 9,000 people in the UK each year.[1] It is more common in men than women and incidence increases as people get older. David had surgery to remove his left kidney, but there was no adjuvant therapy available at that time. He says the surgeon he saw was ‘fantastic and positive’. Appealing for treatment In December 2006, two years after his first diagnosis, David was told that the cancer had spread to his lungs and lymph nodes.

 

His specialist wanted to prescribe him sorafenib| (Nexavar®), a drug that had been proven effective in treating advanced kidney cancer. However, his primary care trust (PCT) prohibited this, so David had to apply for exceptional funding. His first application was rejected, but he appealed and the PCT overturned its decision.

 

In the meantime, David had gone three months without treatment. During this time, David’s wife discovered that she also had cancer.

Campaigning for change

In a speech to an All Party Parliamentary Group on Cancer at the Houses of Parliament in 2009, David said, ‘You can imagine how devastating this was for my family. My children were burdened with the knowledge that both of their parents had cancer, and one was being denied treatment. Luckily, their mother is okay and I am still here.’

'The biggest impact of the postcode lottery is on rarer cancers.'

David is a strong advocate of the Cancer Drugs Fund| and points out that it has helped 11,400 people since it was established last year. ‘However, there are still areas of the UK where it is much harder to get approval for new cancer drugs. The biggest impact of the postcode lottery is on rarer cancers.’

Living with cancer

Before 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 spread significantly. David has also been taking part in a trial for everolimus (Afinitor®) since 2009.

 

David admits that he has difficult days. ‘I’ve had fantastic treatment, and support from my family and work. But there are psychological issues. Every three months I have to go for a CT scan and I never know what the result is going to be.

 

A lot of the other people I’ve met with kidney cancer have now died or are in a very poor condition. It’s difficult to come to terms with the fact that, at some point, that’s going to be me.

 

But I do think that there’s nowhere better than the NHS when you’re seriously ill. And working with Macmillan has been fantastic.'

More information

David was awarded a Macmillan Cancer Champion| award in 2010. This is given to volunteers who have used their experience of cancer to help others.

 

Macmillan has information about kidney cancer| and the Cancer Drugs Fund|.

 

Kidney Cancer Support Network  |

 

Rarer Cancers Foundation  |

Reference

Cancer Research UK website. Kidney cancer statistics|.