Referral to a specialist for chronic lymphocytic leukaemia (CLL)

Your GP should refer you for a blood test if you have symptoms that could be due to chronic lymphocytic leukaemia (CLL). They might refer you to a blood specialist (haematologist). 

Depending on your symptoms and other factors, this might be an urgent suspected cancer referral.

You will have a blood test or see a haematologist as soon as possible. Ask your GP when this is likely to be.

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 respond to treatment, such as antibiotics.

Your GP might arrange for you to have some tests first. This will help them decide if you need to see a specialist. Your CLL might also have been picked up when you had a blood test for something else.

Everybody who has CLL should have the diagnosis confirmed by a specialist at the hospital. But in some cases, the GP will lead the care of your CLL. This might be the case if, for example, you are diagnosed during a routine blood test for something else.

UK referral guidelines

There are guidelines for GPs to help them decide who needs a referral. These vary slightly between the different UK nations. Your GP will use these guidelines as well as their own experience and judgement.

Some of the guidelines have targets around how quickly you are referred. For example, you might have blood tests within 2 days. Or you may see a specialist immediately (within a few hours).

In England and Wales

If you are over 24 years old

Your GP should consider a full blood count  blood test within 48 hours if you have any of the following:

• 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 nodes
• bruising or bleeding for no reason
• unexplained red, purple or dark spots on the skin (petechia )
• an enlarged spleen or liver on examination

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

If you are aged 24 or under

Your GP should refer children and young adults immediately (within a few hours) to a specialist if they have either:

• unexplained red, purple or dark spots on the skin (petechia)

• an enlarged liver or spleen

Your GP should consider a full blood count blood test for children and young adults within 48 hours if they have any of the following:

• look unusually pale

• extreme tiredness (fatigue) that won’t go away

• unexplained high temperature (fever)

• unexplained infections that won't go away

• swollen lymph nodes

• bone pain that won't go away and can't be explained

• bruising or bleeding for no reason

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

In Northern Ireland

The Northern Ireland guidelines are for all blood cancers, not just leukaemia.

Your GP should refer you immediately to see a specialist if:

• your blood test results show you have acute leukaemia
• you have either spinal cord compression  or kidney failure which your GP thinks could be caused by myeloma

Your GP should refer you urgently if you have unexplained enlarged spleen that doesn’t get smaller.

Your GP should do further tests and consider referring you to a specialist if you have a combination of some of the symptoms listed below. The urgency of the referral depends on how severe your symptoms are and your test results. Symptoms include:

• extreme tiredness (fatigue)

• heavy sweating at night

• high temperature (fever)

• losing a lot of weight

• itching all over the whole body

• feeling breathless

• bruising

• bleeding

• infections keep coming back

• bone pain

• pain after drinking alcohol

• tummy (abdominal) pain

• swollen lymph nodes

• enlarged spleen

If swollen lymph nodes are your only symptom, you do not usually need to see a specialist.

In Scotland

The Scottish guidelines are for all blood cancers, not just leukaemia.

You should have an urgent referral to a specialist if:

• your blood test result suggests that you have acute leukaemia or chronic myeloid leukaemia
• your swollen lymph nodes are larger than 2 cm and have either been swollen for more than 6 weeks or are getting bigger
• you have a swollen (enlarged) liver or spleen but you don’t have any known liver disease
• you have bone pain together with anaemia or an abnormal paraprotein
• a bone x-ray suggests you may have myeloma

You might have an urgent referral if you also have any of the following signs or symptoms:

• extreme tiredness (fatigue)

• heavy sweating, especially at night

• weight loss

• itching

• bruising

• infections that keep coming back

• bone pain

• weeing a lot and feeling very thirsty due to high calcium levels in your blood

Other symptoms

Your GP will consider any other symptoms you have, so do mention these.

Risk factors

Your GP might also take into account whether you have any risk factors that affect your chances of developing CLL.

If you're still worried

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 explain why they don’t think you need a referral.

Contact your GP again if your symptoms don't get better or you notice any new or unusual symptoms. 

What should you do if you don’t get an appointment?

If your GP has referred you to a specialist, ask them when you should get your appointment. Contact them again if you don’t get one. Or some hospitals have a referral service you could try contacting if you know which hospital you are going to. Explain that you are waiting for an urgent suspected cancer referral.

Waiting times

Your hospital is working towards waiting time targets. For example, a target to find out whether you have cancer or not. And there are targets to start treatment if you are diagnosed with cancer. These are slightly different depending on where you live in the UK.