Being diagnosed with a rare cancer

  • I've just been diagnosed

  • I'm having treatment

  • I've finished treatment

  • Older people

    This information is for older people who have questions or concerns about cancer. It explains the different types of treatment and support available. It also has information about living with cancer and other conditions.

  • Teens and young adults

    If you are a young person who is living with cancer, there is information and support especially for you.

  • Children's cancer

    Information about children's cancers, including how they are diagnosed, the treatments involved, possible side effects and how to get support.

  • Someone I know has cancer

  • I'm looking after someone with cancer

  • Cancer and other conditions

    Information and advice to help you cope with cancer if you are also coping with another medical condition.

  • Cancer and pregnancy

    Being diagnosed with cancer during pregnancy can be very hard. You might be coping with difficult feelings, or facing hard decisions about cancer treatment. Here is some information about coping with the emotional and practical issues you may experience, being diagnosed with cancer during pregnancy, the treatment you may have and having your baby.

A rare cancer can be difficult to diagnose. You may need to have more tests than people with more common cancers. You may be referred to more than one specialist as the doctors try to find and understand what type of cancer you have.

There are a number of reasons why there may be a delay in diagnosing a rare cancer:

  • The symptoms may be similar to common conditions. For example, back pain may be confused with a common back problem.
  • Symptoms of some rare cancers are unusual and less known to doctors than symptoms caused by more common types of cancer.
  • The cancer develops in a person ‘not expected’ to get cancer. This is especially the case in young adults and teenagers. Because cancer in younger people is rare, doctors may look for causes other than cancer when a young person has symptoms.
  • Extra tests may be needed to find out the type of cancer. These may take longer to do. For example, samples may need to be sent to a specialist laboratory for examination.

There are guidelines to help GPs know when to refer people to a specialist, if their symptoms might be due to a cancer.

If you are having tests to check for cancer, you may want to ask your doctors questions to help you understand what is happening:

  • When will you know if I have cancer?
  • Which tests do I need?
  • How long will it take before I get the results?
  • How will I be told the results?

Waiting for test results

Waiting for test results can be a difficult time. It may take from a few days to a couple of weeks for the results of your tests to be ready. You may find it helpful to talk with your partner, family or a close friend. Your specialist nurse or one of the organisations listed on our database, can also provide support. You can also talk things over with one of our cancer support specialists on 0808 808 00 00.

I was diagnosed with a rare type of non-Hodgkin lymphoma when I was 39. Because the disease is rare and usually affects older people, it took several months to get diagnosed.


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