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Practice comment

"People with rare cancers get a raw deal in research and care"


People with rarer cancers deserve the same support and information as those with more common cancers

Today, around 850 people in the UK will be diagnosed with cancer. Over half of them will have a cancer of the breast, bowel, prostate or lung. The government says it is committed to all cancer patients having access to the best possible treatment, care and support - but do people with rarer cancers get a raw deal compared with those who have the “big four”?
There have been dramatic improvements in survival times in breast and colon cancer in recent years. Prostate cancer survival has improved, too. However, lung cancer survival has barely improved in the past few decades. So big numbers don’t guarantee a better outcome.
Do certain cancers rule the research roost? Research into breast cancer accounted for 20% of site-specific research funding in 2010, more than the combined expenditure on stomach, oesophagus, pancreas, brain and lung cancer research (National Cancer Research Institute, 2010).
The Cancer Drug Fund gives access to treatments that were unavailable on the NHS and has been hailed as a success for people with rarer cancers. It was set up partly in response to criticisms of the National Institute for Health and Clinical Excellence’s cancer drug appraisal process. But, if there is a dearth of research into rarer cancers, is it a surprise that NICE has a problem sanctioning new drugs for them?
As for public awareness, certain cancers take centre stage. What cancer do you associate with pink? If you said breast, that is due to the work of charities in raising awareness and supporting those affected by breast cancer. That the biggest site-specific charities are associated with some of the better-outlook cancers shows their invaluable support for cancer survivors.
Better outcomes in rarer cancers need the resources to replicate breast cancer’s model of rapid referral and diagnosis, multidisciplinary care, access to information and support, access to clinical trials and partnership with the voluntary sector.
Good cancer care isn’t just about treatments and outcomes - it’s about people.
Everyone living with and beyond cancer should be empowered to manage their condition according to their needs and preferences, regardless of cancer type. Everyone approaching the end of their life should have the support they need to die well.
Directing patients to expert sources of information and support such as the Macmillan Support Line can help to achieve these aims. Web forums such as Macmillan’s online community and the Rarer Cancers Foundation let people share experiences across health authorities and continents.
While a cancer may be rare, the practical, emotional and financial issues are often all too common. Knowing where patients can find professional and peer support can be a first step in ensuring they have the information and care they need.

John Newlands is a cancer information nurse specialist for Macmillan’s Glasgow office. Call the Macmillan Support Line free on 0808 808 00 00, Monday-Friday 9am-8pm, or visit

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Readers' comments (2)

  • This is not unique to cancer but to many rare conditions where it is felt that - because they are rare - funds are wasted. WHo cares about the patients and their suffering?

    Nurse need to think about this!

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  • i listened to an interesting debate in Europe the other day about the rationing of treatment for all patients with rare conditions. here it is an insurance issue and they no longer wish to continue paying for some of the expensive treatment and especially if their effectiveness is not proven even though some individuals have become dependent on them - sounds a bit like NICE and it is very scary for those of all ages who are affected.

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