Living with a rare cancer

We often hear stories from callers about how hard it is having a rare cancer – there are few opportunities to connect with others living with the same diagnosis, media stories are usually about more common cancers, and people say they feel very alone.

It is estimated that there are 198 types of rare cancers. Some of these are unusual types of common cancers such as colon (large bowel) or breast cancer while others are completely separate types eg cancer of the small bowel, or sarcomas. There’s no expert agreement about which types of cancer are rare – some organisations such as American Cancer Society and Macmillan Cancer Support (UK) say that for a cancer to be rare it means fewer than 6 in 100,000 people are diagnosed with that cancer each year. According to the American Cancer Society about 1 in 5 cancers diagnosed in the US is a rare cancer.

Cancer  often brings uncertainty which can be hard to cope with. If you have a rare cancer, uncertainty can be increased as there is less information available about your type of cancer than more common cancers. You may have longer waiting times for your diagnosis to be completed and/or for your treatment to start. It may be harder for your doctor to answer your questions or give you predictions about how treatments are likely to work.

The good news is that there is growing interest in developing clinical trials for rare cancers around the world, which in time will help give better information and the best ways to treat these cancers.

Whatever cancer type you or someone close to you has, at the Cancer Society we aim to provide information and support relevant for you. We use a wide range of international resources to get more information and connect you with others. Recently a man with breast cancer contacted our nurses and said all he could find to read was ‘pink’ and he was relieved to find we have a booklet on breast cancer in men.

Other good sources of support if you have a rare cancer are:

Rare Cancers Europe – see their list of  cancer patient support organisations and websites.

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