What is a rare cancer? | Cancer Research UK
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There are more than 200 different types of cancer, including leukaemias and lymphomas. They develop from different types of cells. Some of these cancers are common, such as breast, bowel, prostate and lung cancer. Some cancer types are uncommon and some are rare.

A cancer is considered rare if

  • It starts in an unusual place in the body
  • The cancer is an unusual type and may need special treatment
  • It is not one of the common types of cancer

Experts have slightly different ideas about what makes a cancer rare. Some experts say that a cancer type is rare if fewer than 2 in 100,000 people are diagnosed with it each year. Others say it is rare if fewer than 6 in 100,000 people are diagnosed each year.

As doctors and researchers learn more about cancer, they are identifying subtypes of common cancers that are considered rare – for example, angiosarcoma of the breast. Some subtypes of common cancers need different treatment, but many don’t.

Finding information about your cancer can be difficult if you have a rare type. We have information about many types of rare cancer in this section of the website. You can find them on the rare cancers list. If you have an unusual subtype of a common cancer, you may find information about it in the main section for that type of cancer.

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There are more than 200 different types of cancer, including leukaemias and lymphomas. They develop from the different types of cells in different parts of the body. Some of these cancers are common, such as breast, bowel, prostate and lung cancer. Some types are uncommon and some are rare.

A cancer is considered to be rare if  

  • It starts in an unusual place in the body
  • The cancer is an unusual type and may need special treatment
  • It is not one of the common types of cancer

Experts have slightly different ideas about what makes a cancer rare.

Some experts say that a type of cancer is rare if fewer than 2 in 100,000 people are diagnosed with it each year. Others say it is rare if fewer than 6 in 100,000 people are diagnosed each year. In America, the definition of a rare cancer is that fewer than 15 people in 100,000 are diagnosed with it each year.  

Using the 6 out of 100,000 figure means that 1 in 5 people diagnosed with cancer in Europe have a rare type. Research also shows that about 1 in 3 people who have a rare cancer have a particularly rare type. Particularly rare means that it affects fewer than 1 in 100,000 people each year.

If you can’t find the full name of the cancer your doctor has given you in our rare cancers list, it may be because it treated the same way as other cancers of that type.  You can just use the relevant cancer section. For example, there are several subtypes of the most common ovarian cancer – serous, endometrioid, clear cell and mucinous. But they’re all treated in the same way and all the information in our regular ovarian cancer section would apply to you.

As doctors and researchers learn more about cancer, leukaemias and lymphomas  they are identifying particular features that divide them into subtypes. Some of these subtypes are considered rare.

Some cancer sub types are treated differently. For example, angiosarcoma of the breast is treated differently to most other breast cancers. Where this is the case, we will include these in our rare cancers list.

If you can’t find the full name of the cancer your doctor has given you in our rare cancers list, it may be because it treated the same way as other cancers of that type.  You can just use the relevant cancer section. For example, there are several subtypes of the most common ovarian cancer – serous, endometrioid, clear cell and mucinous. But they’re all treated in the same way and all the information in our regular ovarian cancer section would apply to you.

 

Coping and isolation

Having a rare cancer is not easy to cope with. Many people feel isolated.

If you have a rare type of cancer, leukaemia or lymphoma

  • You are less likely to meet other people with the same type
  • It is often more difficult to find information about it
  • It may take longer to get a diagnosis

If you have a rare cancer, you may need to travel to a specialist hospital for treatment. This may be quite a long way from home. You may feel cut off from family and friends. It is important to give yourself time to cope. We have a lot of information about help and support available in the coping with a rare cancer section.

 

Where to get information about rare cancers

We have information about some rare types of cancer, leukaemia and lymphoma in the main cancer types section. You can choose from the alphabetical list.

In this section there is a list of individual pages about other rare cancers and some cancer subtypes.

If you have a rare sub type of a common cancer you may find information within the main section for that type of cancer, leukaemia or lymphoma. Go to the section about that type of cancer and go to the ‘types’ page. For example, if it is a rare type of bowel cancer, go to the bowel cancer section. Then go to the ‘about bowel cancer section’ and choose the ‘Types of bowel cancer’ page. The page will tell you whether your subtype of bowel cancer (for example) needs to be treated differently or whether it will have the same type of treatment as a regular bowel cancer.

There is also information about other organisations that give information and support about rare cancers.

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Updated: 27 February 2014