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Rare cancers on the rise

written by

Leukaemia Care, Charity

  • Couple with doctor Large

Cancer 52 and the National Cancer Intelligence Network (NCIN) have jointly published a report entitled “Rare and Less Common Cancers: Incidence and Mortality in England, 2010 to 2013.

NCIN, who are part of Public Health England, work to drive improvements in standards of cancer care and clinical outcomes by improving and using the information collected about cancer patients for analysis, publication and research.

Cancer 52 is a growing alliance of over 80 organisations (including Leukaemia CARE) representing the rare or less common cancers. Cancer 52 works to address the inequalities that exist in terms of policy, services and research into the rare or less common cancers (including blood cancers) and to improve outcomes for patients with these highly challenging diseases.

NCIN and Cancer 52 have been working together on this report to provide more detailed information on the rare and less common cancers. A copy of the report is available here.

Incidence and mortality figures have been brought together for many rare and less common cancers for the first time in one place. ‘Rare’ cancers are defined as any cancer with an incidence of less than 6 per 100,000. ‘Less common’ cancers are defined as any cancer with an incidence of more than 6 per 100,000 (excluding the ‘big four’ cancer types – breast, colorectal, lung and prostate).

The report shows that there were 2700 more deaths from these cancers in 2013 than in 2010. In addition to this, whilst rare and less common cancers make up just under half (47% - in 2013) of all newly diagnosed cancers, in 2013 they accounted for 54% of all cancer deaths. This scenario is not only continuing, but worsening, with this figure having increased from 52% in 2007. This means that although you are less likely to be diagnosed with a rare or less common cancer, those who do develop one are more likely to die from it than if they were diagnosed with one of the big four cancers.

There may be a number of different reasons for this, such as an increase in prevalence of certain types of cancer, because they disproportionally affect elder patients (e.g. lymphoma). However, it could also be because of a lack of awareness and attention for rare and less common cancers, leading to later diagnosis and worse outcomes.