Percentage of cancer deaths outside the big four rises to 54% 

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Cancer 52 supports the Medical Innovation Bill
Cancer 52 supports the Medical Innovation Bill

A new report published today (Tuesday 10th June 2014) by Cancer52, an alliance of nearly 80 charities working in the field of rare and less common cancers, shows that the percentage of cancer deaths from those cancers outside the ‘big four’ (of breast, bowel, prostate and lung) is rising with a new high of 54% recorded in 2011. This new data has been collected by the National Cancer Intelligence Network (NCIN), Public Health England, and published on the opening day of its conference in Birmingham on 9th June 2014.

Simultaneously the incidence of those diagnosed with rare and less common cancers is well under half at 47%, and says Cancer52 interim chair Clara Mackay, “This disparity perfectly illustrates the challenges faced by those diagnosed with a less common cancer. At every stage of the cancer pathway from diagnosis to access to treatments everything is more difficult. The patterns vary from cancer to cancer but overall less is invested in research, diagnosis is more complex because the numbers of people with the cancer are smaller and symptoms less well known, once diagnosed the patient experience is worse, and the number of drugs and research programmes developed are fewer with less innovation in the field.” 

These data are one key finding of the work undertaken by the NCIN in the field of rare and less common cancers for Cancer52 in the run up to their conference.

Other key results are:

The impact of Routes to Diagnosis on mortality rates 

Routes to Diagnosis for rare and less common cancers includes data for over 50 less common and rare cancers, which shows the wide variation in the route by which the cancer was diagnosed and the resulting impact on survival

  • this is important because it gives Cancer52 charities the opportunity to look at data specific to the type of cancer they work with, and helps them move people towards the routes to diagnosis that result in better survival rates for their cancer
  • of the less common cancers 12 month survival can be as low as 9% (pancreatic cancer) and 12% (liver cancer) after diagnosis by emergency presentation, which across all cancers gives the lowest survival rate. In contrast 12 month survival for breast cancer diagnosed via the two week wait method is 100%
  • whilst it is not possible with all cancer types to improve survival based purely on Route to Diagnosis, for many people an earlier diagnosis can result in higher survival rates and reduce the stress caused in remaining undiagnosed

Identifying the impact of deprivation ii: poorer people are more likely to get and die from a particular less common cancer type 

  • the poorer you are, the more likely you are to get and die from cancer, with more than 19,000 cancer deaths from all cancers every year linked to lower levels of income according to new research iii*
  • the gap between rich and poor is particularly marked in lung cancer with by far the largest number of excess cases (11,700 persons per year ) and deaths (9,900 persons per year) in the more deprived
  • the gap was also particularly marked in five less common cancer types – for men this was the kidney, oesophageal and non-Hodgkin lymphoma and for women it was kidney, the throat and the back of the mouth (oropharynx) and vulva.

Says Dr Anna Gavin from NCIN, “This report has compiled for the first time some of the best data on less common cancers. It illustrates NCIN’s commitment to data collection on the smallest and most complex of cancers. Individual numbers of people with these cancers may in some cases be extremely small, however by looking at data for large populations we can see patterns and identify areas for further study. The total with these exceptionally challenging cancers includes 132,770 people diagnosed with a rare or less common cancer in 2012 and 70,647 people dying of one of these cancers in 2011.”

Cancer52 is working closely with the Medical Innovation Bill team as the two organisations share a common vision of the Initiative, namely

“innovation in research and clinical practice that allows people with rare and less common cancers more choices and better quality of life, towards their having long and good lives”

→Cancer 52 and the Medical Innovation Bill


i Data taken from Cascade, National Cancer Registration Service, Public Health England, accessed 21st May 2014

ii deprivation based on area of residence

iii The new report compiled by Cancer Research UK and Public Health England’s National Cancer Intelligence Network also reveals there has been virtually no improvement in narrowing the gap in the number of cases between the most and the least deprived people during the last 15 years.

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