Is my cancer rare?
- Andy
- July 26, 2021
- 1:15 pm
Would you like to see a list of rare cancers?
Please visit our ‘rare cancer list‘ to search for your cancer type.
The honest answer is, 'It depends how closely you look.'
Until recently the only way of splitting cancers into various types was by describing where in the body it first started.
This relatively simple approach produced a list of over 20 types but over half of all cases occur in one of four sites- the breast, prostate, lung or bowel.
These are sometimes called ‘the big four’ and because of the numbers of people involved- over 180,000 new cases per year in the UK- it is, sadly, not too difficult to undertake research into these types of cancer because it is easy to find large numbers of people who can be asked if they are willing to be involved.
If we look more closely at the cancers outside the ‘big four’ we see that the numbers of cases in each site is much lower. The common way to illustrate this is to use a ‘pie chart’ where each coloured segment of the ‘pie’ represents a different part of the body.
The segments of the pie get smaller and smaller until it isn’t possible to divide them on the chart so they are lumped together as the ‘really rare’ group. This includes types of cancer which only occur in one or two people in the UK every year.
RareCan concentrates on supporting research into the cancers that fall outside the 'big four'
However, it doesn’t stop there. The invention of ways of looking at cancers under the microscope and more recently, sensitive genetic analysis, has led to an understanding that not all cancers from one part of the body are the same and even within the ‘big four’ there are certain types which have an unusual appearance or genetic fingerprint, and, most importantly, behave in a different way- they grow more quickly or respond less well to standard treatment. Finding enough of these patients to study is also difficult and something we are planning to make a lot easier to do.
So, it is sometimes difficult to say whether or not a cancer is rare
If it occurs outside the big four then the answer may well be yes but it could also be yes if it is an unusual type of cancer of the breast, prostate, lung or bowel.
RareCan concentrates most of its efforts on supporting research in those types of cancer which occur at a rate of less than 6 per 100,000 of the population. As a group this represents about a quarter of all cancers or over 250 people per day in the UK. If you are not sure if your cancer counts as “rare” please contact us or simply sign up with us and we will be able to guide you. We have also produced a list of over 180 rare cancer types that we are particularly interested in – Please have a look to see if your cancer type is listed.
