Should I see a chronic lymphocytic leukaemia (CLL) specialist? | Cancer Research UK
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Should I see a chronic lymphocytic leukaemia (CLL) specialist?

Men and women discussing chronic lymphocytic leukaemia

This page tells you about the guidelines for seeing a chronic lymphocytic leukaemia specialist. There is information about

 

A quick guide to what's on this page

Guidelines for seeing a CLL specialist

It can be difficult for GPs to decide if you may have leukaemia or not. Remember that CLL develops very slowly. The National Institute for Health and Care Excellence (NICE) has produced guidelines to help GPs decide who needs to see a specialist and how soon. 

Your GP should refer you for an urgent full blood count within 2 days, if you are an adult and have any of the following symptoms 

  • Look unusually pale 
  • Extreme tiredness (fatigue) that won't go away 
  • Unexplained high temperature (fever) 
  • Unexplained infections that won't go away or keep coming back 
  • Swollen lymph glands 
  • Bruising or bleeding for no reason 
  • Red or purple spots on the skin - petechia 
  • An enlarged spleen or liver on examination 

CLL is not common in younger people. The NICE guidelines say if you are a child aged 0-15 years or a young person aged 16-24 years, with the above symptoms (except an enlarged spleen or liver), you should be offered an urgent full blood count within 2 days. 

If you are a child or young person with the following symptoms, you should be referred to a specialist immediately (within a few hours) 

  • Unexplained red or purple spots on the skin - petechia 
  • An enlarged spleen or liver on examination

If you have symptoms and don't think your GP is taking them seriously enough, you could print out this page and take it to your GP to discuss.

 

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

 

 

Who should see a specialist

Chronic lymphocytic leukaemia (CLL) is a cancer of the white blood cells. It may not cause many symptoms. Any symptoms tend to come on gradually over a long period of time. It is not uncommon for CLL to be diagnosed through a routine blood test for something else.

CLL is relatively rare. It can be very difficult for GPs to decide who may have a chronic leukaemia and who may have something much more minor that will go away on its own. In many situations, it is perfectly right that your GP should ask you to wait to see if the symptoms get better on their own or go away with treatment, such as antibiotics. If GPs immediately referred everyone with symptoms to a specialist, hospitals would be completely overwhelmed. People needing urgent appointments would not then be able to get them. But, there are particular symptoms, or several symptoms that occur together, 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. 

Remember that CLL develops very slowly. Your GP can usually pick it up from a blood test and it doesn't often need an urgent referral.

Seeing a specialist

While reading these guidelines, it is important to remember that

  • 75 out of every 100 people diagnosed with a leukaemia (75%) are over 60, but you can be diagnosed at any age
  • Most people are diagnosed with leukaemia after going to their doctor with symptoms such as tiredness, breathlessness, bruising, bleeding, repeated infections and looking pale
  • CLL can cause swollen lymph glands, often in the armpit or neck, an enlarged liver and enlarged spleen (doctors call this hepatosplenomegaly)

 

 

Who should see a specialist urgently

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. 

According to the guidelines, if you are an adult you should be referred for an urgent full blood count, within 2 days if you have 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 
  • Red or purple spots on your skin - petechia 
  • An enlarged spleen or liver on examination 

CLL is not common in young people. The NICE guidelines say if you are a child aged 0-15 years, or a young person aged 16-24 years, your GP should refer you immediately - within a few hours - to a specialist if you have 

  • Unexplained red or purple spots on the skin - petechia 
  • An enlarged liver or spleen on examination 

If you are a child or young adult, your GP should offer you an urgent full blood count within 2 days if you have any of the following symptoms 

  • Look unusually pale 
  • Extreme tiredness (fatigue) 
  • High temperature (fever) 
  • Infections that won't go away 
  • Swollen lymph glands 
  • Bone pain that won't go away 
  • Bruising or bleeding for no reason 
 

If you are 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 chronic lymphocytic 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: 7 July 2015