Rare Cancers – What they are and why they matter

Cancer is often spoken about as if it is a single disease but in truth every cancer is different:

all that unites them is an un-regulated division of cells. However, four main groupings of cancers affect the most people. These start in the cells of the breast, lung, prostate or colon. Under the microscope cancers in these organs have one of a few broadly similar patterns. Because they are the most common these cancers have received most attention from researchers in universities and drug companies which is reflected in their coverage in the media.

 

Cancers in other parts of the body and those in the breast, lung, prostate or colon which have unusual patterns under the microscope make up about half of all cancers. Some of the cancers in this group are extremely rare- with only one or two cases occurring in the whole of the UK per year. These pose a particular challenge for researchers and for the doctors looking after the people they affect because of the difficulties of finding enough cases to study or on which to base their advice about treatment. As a consequence, people affected by rare forms of cancer tend to face a less certain future than those affected by more common tumours.

About a quarter of all cancers occur at a yearly rate of less than 6 for every 100,000 people and are by convention classed as “rare”. As there are about 200 different kinds of rare cancer about 70,000 people per year are told they have this diagnosis in the UK. This amounts to a sizable, generally unmet, health need which hasn’t received the attention it deserves in the past- which is why we have set up RareCan.

‘In some cases, it has already been shown that rare cancers are driven by just one or two areas of damage (mutations) and this can make them much more easy to treat if a targeted therapy can be developed’.

Rare cancers present an exciting and interesting challenge for scientists because in many cases they don’t appear to be caused by the wholesale assault on the genetic code (DNA) by smoking or other external factors (carcinogens). In some cases, it has already been shown that rare cancers are driven by just one or two areas of damage (mutations) and this can make them much more easy to treat if a targeted therapy can be developed. Indeed, there are examples of targeted drugs which have already undergone rigorous safety testing for the treatment of a common cancer but have failed to be effective because of the myriad of other mutated genes that are present. The repurposing of these drugs for the treatment of rare cancers is a major opportunity for drug companies to obtain a return on their previous investment and offer them at a cost affordable by the NHS.

By making research and clinical trials easier to achieve, RareCan will help to improve the outcome of people affected by rare cancer- bridging the gap between patients and people who are keen to help them.