Should I see a chronic myeloid leukaemia (CML) specialist?

Men and women discussing Chronic myeloid leukaemia

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

A quick guide to what's on this page
The NICE guidelines for urgent referral
Who should see a specialist urgently
When you should have tests
If you are still worried

Should I see a chronic myeloid leukaemia (CML) specialist?

It can be difficult for GPs to decide if you may have cancer or not. There are particular symptoms that mean your GP should refer you to a specialist straight away. The National Institute for Health and Clinical Excellence (NICE) have produced guidelines for GPs in the UK. They say the following symptoms may mean you need referral to a specialist within 2 weeks

Blood test results that suggest you have chronic leukaemia
Your GP can feel that your liver or spleen is enlarged
A swollen lymph node that is more than 2cm across and has been there for more than 6 weeks
Your lymph nodes are getting bigger
The guidelines also say a GP should think about referring you to a specialist if you have a combination of symptoms such as fatigue, weight loss, night sweats, itching, abdominal pain, shortness of breath, bone pain, bruising, unexplained bleeding, or infections that keep coming back

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 CML section.

The National Institute for Health and Clinical Excellence (NICE) have produced guidelines for GPs to help them decide which patients need to see a specialist urgently. These UK guidelines on referrals for chronic leukaemia were revised in June 2005. NICE say that there are particular symptoms that should alert your GP that you may need to see a specialist urgently. The specialist is usually a haematologist.

While reading these guidelines, do remember that

75 out of every 100 people (75%) diagnosed with a leukaemia are over 60, but you can be diagnosed at any age
Risk factors include having had radiotherapy or chemotherapy before
Most people are diagnosed with leukaemia after going to their doctor with symptoms such as tiredness, breathlessness, bruising, bleeding, repeated infections and looking pale
Infections, bleeding and bruising are not early symptoms of CML
CML can cause an enlarged liver and enlarged spleen – doctors call this hepatosplenomegaly
Enlarged lymph nodes are a later symptom of CML, but can be a symptom of other types of leukaemia

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

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

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

Fatigue
Weight loss
Night sweats and unexplained fevers
Itching
Being short of breath
Bruising easily or unexplained bleeding
Abdominal pain for no apparent reason
Infections that keep coming back
Bone pain

NICE guidelines say your GP should arrange blood tests if

You have unexplained fatigue that has not gone away after a reasonable amount of time
You have swollen lymph nodes for no apparent reason

Your doctor should repeat the blood tests at least once if your condition doesn't improve and there is still no apparent reason for it.

Do bear in mind that many of these symptoms are likely to be caused by other less serious medical conditions. They do not always mean that you have chronic 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. Then you may be able to decide together whether you need to see a specialist and if so, how soon.