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Should I see a HCL specialist?

Men and women discussing hairy cell leukaemia

This page tells you about the guidelines for seeing a specialist for hairy cell leukaemia (a haematologist). You can find information about

 

A quick guide to what's on this page

Should I see a HCL specialist?

Early symptoms of hairy cell leukaemia (HCL) may include tiredness and getting more infections than usual. Occasionally people do not have very many symptoms. HCL is sometimes diagnosed through a routine blood test for something else.

It can be very difficult for GPs to decide who may have a suspected cancer and who may have something much more minor. But there are particular symptoms that mean your GP should refer you to a specialist straight away.

The NICE guidelines

The National Institute for Health and Care Excellence (NICE) has produced guidelines for GPs to help them decide which patients need to be seen urgently by a specialist. You should ideally get an appointment within 2 weeks for an urgent referral. You may need an urgent referral if you have an enlarged spleen which your doctor can feel, is not getting better, and has no explained cause.

The guidelines also say that a GP should do some blood tests, and possibly refer you to a specialist, if you have a combination of symptoms including tiredness (fatigue), weight loss, night sweats and unexplained high temperatures (fevers), itching, shortness of breath, bruising or unexplained bleeding, abdominal pain for no apparent reason, infections that keep coming back, bone pain or swollen lymph nodes.

If you are concerned that your GP is not taking your symptoms as seriously as you think they should, you could print this page and take it along to an appointment.

 

CR PDF Icon You can view and print the quick guides for all the pages in the About hairy cell leukaemia section.

 

Who should see a specialist

Hairy cell leukaemia (HCL) is a cancer of the white blood cells. It may not have very many symptoms. Symptoms may come on gradually over a long period of time. Sometimes HCL may be diagnosed through a routine blood test for something else.

It can be very difficult for GPs to decide who may have a suspected cancer and who may have something much more minor that will go away on its own. With many symptoms, it is perfectly right that your GP should ask you to wait to see if they get better or respond to treatment, such as antibiotics.

HCL is relatively rare. If GPs immediately referred everyone who came to see them to a specialist, the system would get jammed. People needing urgent appointments wouldn't be able to get them. There are particular symptoms that mean your GP should refer you to a specialist straight away.

 

The NICE guidelines for urgent referral

The National Institute for Health and Care Excellence (NICE) has produced guidelines for GPs to help them decide which patients need to be seen urgently by a specialist. The guidelines say that there are particular symptoms that should alert your GP that you may need to see a specialist (usually a haematologist) urgently.

Seeing a specialist

Remember that chronic leukaemia, including hairy cell leukaemia, develops very slowly. Your GP can usually pick it up from a blood test and it doesn't often need an urgent referral.

While reading these guidelines, it is important to remember that

  • Hairy cell leukaemia is most common in middle aged men
  • Most people are diagnosed with leukaemia after going to their doctor with symptoms such as tiredness, breathlessness, bruising, bleeding, repeated infections and looking pale
  • HCL can cause an enlarged spleen (doctors call this splenomegaly)
 

Who should see a specialist urgently

According to the NICE guidelines, you should ideally get an appointment within 2 weeks for an urgent referral. If you have these symptoms, you may need an urgent referral to a specialist.

  • An enlarged spleen which your doctor can feel, is not getting better, and has no explained cause

The guidelines also say that a GP should either do some blood tests, and possibly refer you to a specialist, if you have combinations of the following symptoms

  • Tiredness (fatigue)
  • Weight loss
  • Night sweats and unexplained high temperatures (fevers)
  • Itching
  • Being short of breath
  • Bruising easily or unexplained bleeding
  • Abdominal pain for no apparent reason
  • Infections that keep coming back
  • Bone pain
  • Swollen lymph nodes

These are symptoms of leukaemias and lymphomas generally and may not be a sign of hairy cell leukaemia in particular.

Your doctor should repeat the blood tests at least once if your condition doesn't improve and no cause for your symptoms has been found.

 

If you are still worried

Do bear in mind that many of these symptoms can be caused by other less serious medical conditions. They do not always mean that you have hairy cell leukaemia or any other type of leukaemia.

If you are concerned that your GP is not taking your symptoms as seriously as you think they should, you could print this page and take it along to an appointment. Ask your GP to talk it through with you and then you may be able to decide together whether you need to see a specialist and if so, how soon.

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Updated: 2 April 2015