Rare cancers

There are more than 200 different types of cancer, including ​leukaemias​ and ​lymphomas​ . Doctors often class cancers as common, less common and rare.

A rare cancer is one that affects a small number of people. Doctors might also call a cancer rare if it starts in an unusual place in the body. Or if the cancer is an unusual type of a more common cancer.

Questions to ask your doctor about getting diagnosed with a rare cancer

You are likely to have a lot of questions for your doctor. It might help to write them down so you don't forget. It’s also a good idea to take someone with you to the appointment such as your partner, family member or a close friend. They can support you and help you remember what the doctor has said.

Your doctor might not be able to answer all your questions straight away. They may need the results of some tests first or want to ask other doctors for advice.

Here is a list of things you could ask:

When you first see your doctor:

• When will I know if I have cancer?

• What tests do I need?

• How long before I get the results?

• How will I be told the results?

• Do you have someone I can contact while I am waiting for the results to come back?

If you are diagnosed with cancer:

• What type of cancer do I have?

• Where is the cancer?

• Are there any signs that the cancer has spread?

• What happens if the cancer has spread?

• Do I need any other tests?

• What chance do I have of surviving this cancer?

• How rare is this cancer?

• Should I get a second opinion? How do I get the second opinion?

Having treatment:

• Will the treatment be different from the commonest type of this cancer?

• When will I start?

• what are the expected side effects?

• What if I don’t have treatment?

• How will we know the treatment is working?

• How long is the treatment?

• Where do I go for treatment?

• How am I likely to feel?

• Will I be able to work or look after my children during treatment?

• When am I likely to see you again?

Help and support:

• What practical and emotional support can I get?

• Is there any financial help available to me?

• Are there support groups, or anyone else I can talk to about this type of cancer?

It’s a worrying time for many people and we want to be there for you whenever - and wherever - you need us. Cancer Chat is our fully moderated forum where you can talk to others affected by cancer, share experiences, and get support. Cancer Chat is free to join and available 24 hours a day.

Visit our Cancer Chat forum

Rare cancer organisations

Cancer52

This is an alliance of over 100 organisations working to address inequality in funding for rare cancers and improving outcomes for patients.

Email : info@cancer52.org.uk

Visit the Cancer52 website

RareCan

RareCan allows people with rare cancer types to share their information with researchers. By doing this they hope to speed up the finding of new treatments and ways to diagnose people with rare cancer. RareCan also allows people to connect with other people who have a rare cancer.

Visit the RareCan website

EURACAN

EURACAN connects patients who have rare adult solid cancer to expert health care centres across Europe.

Visit the EURACAN website

Finding information

It can be hard to find information about a rare type of cancer. Ask your doctor or specialist nurse if they know of any suitable information. You could ask about the best term to use if you want to look for information online.

You can also check if we have information about your cancer type on our website. Search by putting the name in the search box at the top of each page. Or look for your cancer type on our A to Z list. You can then read about the different types of that cancer.

A to Z list of cancer types