Rarer Cancers Survey Report

The Government’s new cancer strategy, “Improving Outcomes: a Strategy for Cancer”, has set an objective of saving an additional 5,000 lives by 2014/15.  Taking into account the incidence and mortality associated with rarer cancers, it would be reasonable to assume that 2,500 of these lives would be for rarer cancers.

Last year, the Department of Health asked The Rarer Cancers Foundation to undertake a survey in order to better understand how rarer cancer patients were first diagnosed with cancer and to assess whether the process for identifying the signs and symptoms of rarer forms of cancer could be improved.  AMMF was asked if our supporters would help with the survey regarding their experiences prior to the diagnosis of cholangiocarcinoma.

The RCF have now published their report on the findings: “Primary Cause?  An audit of the experience in primary care of rarer cancer patients”, which is clear to read and understand, and is certainly interesting.

Amongst other things, the report reveals that too many patients are experiencing unacceptable delays in diagnosis.  (We already know that cholangiocarcinoma is difficult to diagnose, and that delayed diagnosis means that surgery, currently the only really effective treatment, may be ruled out.)

On this point the report concludes that if the Department of Health is to meet its ambitious goal of saving an additional 5,000 lives a year from cancer by the end of this Parliament – half of which should be delivered in patients with rarer forms of cancer – then it will have to take note of the unacceptable delays in diagnosis and address the problem.

Many thanks from AMMF to everyone who took part in the survey, as this has meant that cholangiocarcinoma is noted amongst the 20 or so rare cancers mentioned – see the respondents’ percentage graph on page 12 of the report.

Please click on the link below to download a pdf copy of the report: