Referral to a specialist for hairy cell leukaemia

Your GP should refer you for an urgent blood test if you have symptoms that could be due to hairy cell leukaemia. They might refer you to a blood specialist (haematologist).

Seeing your GP

It can be hard for GPs to decide who may have cancer and who might have a more minor condition. For some symptoms, your doctor may ask you to wait to see if the symptoms get better. Or if they respond to treatment, such as antibiotics.

Hairy cell leukaemia is a chronic leukaemia. Symptoms might develop slowly. Sometimes it does not need an urgent referral. 

It is important to remember that:

  • your symptoms are likely to be caused by something other than cancer, but it is important to have them checked by your GP
  • hairy cell leukaemia is rare

Referral guidelines

The National Institute for Health and Care Excellence (NICE) and the Scottish Government have produced referral guidelines for cancer. These guidelines help GPs decide who needs to see a specialist and how soon they should see them. 

For example, you might have blood tests very urgently within 2 days. Or you may see a specialist immediately (within a few hours). These time frames are not included in Scottish guidance. But wherever you live, you are seen as quickly as possible.

These guidelines vary slightly between the different UK nations. The following is a summary. 

Urgent referral

The UK guidelines are for blood cancers (leukaemia and lymphoma) in general. 

Adults over 24 years old should be referred for an urgent full blood count within 2 days, for any of the following symptoms:

  • look unusually pale
  • extreme tiredness (fatigue)
  • unexplained high temperature (fever)
  • unexplained infections that won't go away or keep coming back
  • swollen lymph glands
  • bruising or bleeding for no reason
  • unexplained petechial rash (red and purple spots on the skin)
  • an enlarged spleen or liver on examination

The GP should then refer you to a blood specialist if blood test results show that you might have leukaemia.

There are separate guidelines for children and young people under 24 years of age. Hairy cell leukaemia is extremely rare in children and young people. So we have not included these guidelines.

Remember most people with one or more of these symptoms don't have leukaemia. But it's important to get any symptoms checked out by your GP.

What to expect

At the hospital the haematologist:

  • asks about your medical history and symptoms
  • examines you

They are likely to take more blood tests. They will arrange for further tests, such as a bone marrow biopsy. These confirm your diagnosis and help them plan your treatment.

If you're still worried

Do remember that many of these symptoms can be caused by other less serious medical conditions. They do not always mean that you have leukaemia.

Sometimes you might feel that your GP is not concerned enough about your symptoms. If you think they should be more concerned, print this page and the symptoms page. Ask your GP to talk it through with you. Together you can decide if you should see a specialist.

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