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

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.

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)

The NICE guidelines say your GP should take blood tests if

• You have unexplained fatigue (tiredness and lack of energy) that has not gone away after a reasonable amount of time
• You have swollen lymph nodes for no apparent reason

The blood tests should be repeated at least once if your symptoms don't improve and there is still no apparent reason for it.

The guidelines also say that a GP should think about referring you to a specialist if you have a combination of the following symptoms

• Tiredness (fatigue)
• Weight loss
• Night sweats and unexplained fevers
• Itching
• Breathlessness
• Bruising easily or unexplained bleeding
• Abdominal pain for no apparent reason
• Infections that keep coming back
• Bone pain

According to the NICE guidelines, you should ideally get an appointment within 2 weeks for an urgent referral if you have any of the following symptoms

• Blood test results that suggest you have chronic leukaemia
• A swollen lymph node that is larger than 2cm across and has been there for more than 6 weeks
• Your GP can feel your liver or spleen is enlarged
• Lymph nodes increasing in size, particularly if they are widespread and have been enlarged for more than 6 weeks.

The NICE guidelines also say that the urgency of referral depends on the severity of the symptoms and signs and findings of investigations.

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.