Overview
What is chronic lymphocytic leukaemia?
- Chronic lymphocytic leukaemia is a rare type of cancer that affects the blood and bone marrow.
- It usually develops very slowly and does not always need to be treated straight away.
- Chronic lymphocytic leukaemia cannot usually be cured, but it can be managed with treatment.
- It's more common as you get older. It's very rare in people under 40.
- It's not clear what causes chronic lymphocytic leukaemia, but having a close family member who's had it may mean you have a slightly higher risk.
Get your symptoms checked
It's important to get any symptoms of chronic lymphocytic leukaemia checked as soon as possible. Finding it early can mean it's more treatable.
Symptoms
Many people who have chronic lymphocytic leukaemia do not have any symptoms.
Symptoms are not always obvious at first and can be similar to other conditions.
The main symptoms of chronic lymphocytic leukaemia include:
- swollen glands, usually in your neck or under your arms
- losing weight
- getting ill a lot
- feeling tired even though you've had a good night's sleep
- a rash that looks like small bruises or bleeding under the skin and does not fade when you roll a glass over it, similar to meningitis
- bleeding or bruising for no reason
- looking unusually pale and feeling breathless
- a high temperature even though you're not unwell
- aches and pains that will not go away
- sweating at night
Chronic lymphocytic leukaemia is rare in people under the age of 40.
See a GP if:
- you have symptoms of chronic lymphocytic leukaemia
Important
These symptoms are very common and can be caused by many different conditions.
Having them does not definitely mean you have chronic lymphocytic leukaemia. But it's important to get them checked by a GP.
This is because if they're caused by cancer, finding it early can mean it's more treatable.
What happens at your GP appointment
The GP may ask to examine you. This is so they can check any parts of your body that are swollen or painful.
You can have a friend, family member or other member of staff in the room with you during the exam if you want.
They may also arrange for you to have a blood test.
Referral to a specialist
The GP may refer you for more tests or to see a specialist in hospital if they think you have a condition that needs to be investigated.
This may be an urgent referral, usually within 2 weeks, if you have certain symptoms. This does not definitely mean you have cancer.
Find out more
Causes
It's not clear what causes chronic lymphocytic leukaemia.
Chronic lymphocytic leukaemia is rare, but it's more common:
- as you get older – it's very rare in people under 40
- if you're male
- if someone in your family has had it
It's unlikely that your symptoms are caused by cancer, but it's important to get symptoms of chronic lymphocytic leukaemia checked by a GP.
Tests and next steps
Your doctor will do tests to check if you have chronic lymphocytic leukaemia.
The main tests are blood tests to check your blood cells and look for signs of cancer.
These may be done by a GP or a specialist.
Getting your results
Your doctor will explain what the results mean and what will happen next. You may want to bring someone with you for support.
If you're told you have chronic lymphocytic leukaemia
Being told you have cancer can feel overwhelming. You may be feeling anxious about what will happen next.
It can help to bring someone with you to any appointments you have.
A group of specialists will look after you throughout your diagnosis, during and after treatment.
Your team will include a clinical nurse specialist who will be your main point of contact during and after treatment.
You can ask them any questions you have.
Get support
Macmillan Cancer Support has a free helpline that's open every day from 8am to 8pm.
They're there to listen if you have anything you want to talk about.
Call 0808 808 00 00.
Next steps
If you've been told you have chronic lymphocytic leukaemia, you'll usually need more tests, such as:
These tests will help the specialists find out how much the cancer has developed (called the stage).
This will help the doctors decide if you need to have treatment or plan your treatment if you need it.
Treatment
It's not possible to cure chronic lymphocytic leukaemia, but treatment can control it.
You may not need to have treatment straight away when you're diagnosed with chronic lymphocytic leukaemia.
You'll usually be seen by a doctor or nurse regularly. How often you're seen depends on the stage of your cancer, if you're having active treatment and how you're feeling.
When you start treatment depends on:
- your symptoms
- the stage of the cancer
- your general health
You can live with chronic lymphocytic for years and may need to repeat treatment several times.
The main treatments for chronic lymphocytic leukaemia are targeted medicines and chemotherapy. You may just have a targeted medicine on its own or combined with chemotherapy.
Rarely, other treatments can include radiotherapy and surgery.
The specialist team looking after you will:
- explain the treatments, benefits and side effects
- work with you to make a treatment plan that's best for you
- help you manage any side effects
- help and support you during your recovery
You'll have regular check-ups during and after any treatments. You may also have tests and scans.
If you have any symptoms or side effects that you're worried about, talk to your specialists. You do not need to wait for your next check-up.
Targeted medicines
Targeted cancer medicines aim to stop the cancer growing or help your immune system fight the cancer.
You may have them on their own or with chemotherapy.
Chemotherapy
Chemotherapy uses medicines to kill cancer cells.
You usually have chemotherapy with targeted cancer medicines given at the same time.
Radiotherapy
Radiotherapy uses high-energy rays of radiation to kill cancer cells.
You may have radiotherapy for chronic lymphocytic leukaemia if your symptoms get worse or other treatments are not working as well anymore.
Surgery
Rarely, you may need to have an operation to remove your spleen if you have chronic lymphocytic leukaemia.
The spleen is a small organ that filters your blood. It's part of your immune system, but you can live without it.
If you're not able to have surgery, you may have radiotherapy instead.
Supportive treatments
You may also need to have treatment to prevent or control symptoms caused by chronic lymphocytic leukaemia.
This may include:
- medicines to prevent infections
- vaccines to prevent illness, such as the flu, pneumonia and coronavirus (COVID-19) vaccines
- blood or platelet transfusions
- steroid medicines
What happens when your symptoms come back
When your symptoms come back, this is called a relapse. This may happen slowly and you may not need to have treatment straight away.
You may have several relapses while you live with chronic lymphocytic leukaemia.
You may need more treatment to control the cancer. You'll have more tests so doctors can work out which treatments will work best for you.
When your symptoms are under control, this is called remission. This can last for years.
It can be difficult living with CLL and knowing it can come back at any time.
It can help to get support from family, friends or a support organisation if you get anxious between appointments.
Help and support
You and your loved ones will be supported throughout your treatment by a group of specialists.
The clinical nurse specialist, or another member of your specialist team, will be able to give you information about local support services that you may find helpful.
There are also national cancer charities that offer support and information about chronic lymphocytic leukaemia.
CLL Support
Information and support for anyone affected by chronic lymphocytic leukaemia.
Blood Cancer UK
Information and support for anyone affected by blood cancer.
Lymphoma Action
Information and support for anyone affected by lymphoma.
Leukaemia Care
Information and support for anyone affected by blood cancer.
Macmillan Cancer Support
Information and support for anyone affected by cancer.
Cancer Research UK
Information and support for anyone affected by cancer.
Maggie's Centres
Practical, emotional and social support for anyone affected by cancer.