Chronic Lymphocytic Leukaemia

Overview

Chronic lymphocytic leukaemia (CLL) is a slow-growing cancer of the blood and bone marrow. Bone marrow is the soft tissue inside your bones where blood cells are made. In CLL, the body makes too many of one type of white blood cell called a lymphocyte. Lymphocytes normally help fight infection, but the extra ones in CLL do not work properly and build up in the blood, lymph nodes (small bean-shaped glands that help filter germs) and other organs. 'Chronic' means it usually develops slowly over months or years, and 'lymphocytic' means it starts in lymphocytes. Many people with CLL feel well and may not need treatment for a long time.

CLL is one of the most common types of leukaemia in adults in the UK and other Western countries, but it is still a relatively uncommon condition overall. It is not infectious and cannot be passed on to other people.

CLL mostly affects adults over the age of 60, and it is more common in men than in women. It is rare in people under 40 and extremely rare in children. It is also more common in people of white European background than in other ethnic groups.

Symptoms

Common symptoms

• Often no symptoms at all — CLL is frequently found on a routine blood test
• Feeling very tired or lacking energy
• Swollen, painless lumps in the neck, armpit or groin (enlarged lymph nodes)
• Getting infections more often than usual, or taking longer to recover from them
• Bruising or bleeding more easily than usual
• Drenching night sweats
• Losing weight without trying
• Feeling full or bloated after eating only a little, due to an enlarged spleen (an organ on the left side of your tummy that filters blood)
• Shortness of breath or looking pale, caused by a low red blood cell count (anaemia)
• Itching of the skin, especially after a warm bath or shower
• Repeated or unusual infections such as chest infections or shingles

Symptoms in children

• CLL almost never affects children. Other types of leukaemia are much more likely in childhood.
• If a child has persistent tiredness, unexplained bruising, repeated infections or swollen glands, a doctor should check them promptly — but this is very unlikely to be CLL.

Symptoms in older adults

• CLL is most often found in people over 60, frequently during a blood test done for another reason
• Tiredness may be put down to getting older, so it is worth mentioning ongoing fatigue to your doctor
• Infections can be more serious in older adults, so report fevers early
• Other health conditions, medicines and general fitness are all taken into account when deciding whether and when to start treatment
• Regular gentle activity and keeping up with recommended vaccinations help protect your health

Causes

Main causes

• CLL happens when changes (mutations) build up in the genes of a type of white blood cell in the bone marrow, causing it to keep multiplying when it should not.
• These gene changes are acquired during a person's life. They are not usually inherited and are not passed on to children.
• In most cases there is no single identifiable cause, and nothing you did caused the illness.

Risk factors

• Age — CLL becomes more common as people get older, especially over 60
• Sex — it affects men more often than women
• Family history — having a close relative with CLL slightly increases the chance, but this is uncommon
• Ethnicity — it is more common in people of white European background
• A harmless blood finding called monoclonal B-cell lymphocytosis (a slightly raised number of similar white cells with no other signs of illness) can occasionally develop into CLL, though most people with it never do
• Some studies suggest long-term exposure to certain pesticides or industrial chemicals may play a small role, but the evidence is not strong

When to see a doctor

See a doctor urgently if:

• A fever with feeling very unwell, or any signs of serious infection
• Bruising or bleeding that is new or unusual for you
• Breathlessness that is new or getting worse
• Lumps that are growing quickly or causing pain
• Rapid, unexplained weight loss

Book a routine appointment if:

• Ongoing tiredness that is not improving
• Swollen glands that last more than a few weeks
• Frequent or repeated infections
• Night sweats or itching that keeps bothering you
• Any abnormal blood test result — ask your doctor what it means and whether it needs checking again

Diagnosis

CLL is usually found through a simple blood test, often done for another reason. If the blood counts look unusual, your doctor will arrange further tests to confirm the diagnosis and to work out how far the condition has progressed. You will usually be referred to a haematologist (a doctor who specialises in blood conditions).

Tests that may be done

• Full blood count — measures the number and types of cells in your blood
• Blood film — a sample looked at under a microscope to see the shape of the cells
• Flow cytometry — a test that looks at markers on the surface of blood cells to confirm which type of leukaemia it is
• Genetic and protein tests on the leukaemia cells, which help doctors predict how the condition is likely to behave and which treatments may work best
• Lymph node biopsy (a small sample of a lymph node) — only needed in some cases
• Bone marrow biopsy (a sample of the marrow, usually taken from the hip bone) — only needed in some cases
• Scans such as ultrasound or CT — used if lymph nodes or the spleen are enlarged
• Blood tests to check kidney and liver function and to look for certain infections before any treatment starts

What to expect at your appointment

You may be given a 'stage' for your CLL, which describes how much the disease has grown. Your doctor will then discuss whether you need treatment now or whether monitoring is the best option. Waiting for results can feel anxious, so it can help to write down questions beforehand and take someone with you to appointments. Ask your care team to explain anything that is unclear — you are entitled to understand your own results.

Treatment

Not everyone with CLL needs treatment straight away. If you feel well and your blood counts are stable, your doctor will usually recommend regular check-ups and blood tests — often called 'watch and wait' or 'active monitoring'. This is a genuine and safe approach, not a delay. Treatment is started when the CLL is causing problems, such as troublesome symptoms, low blood counts, or quickly enlarging lymph nodes or spleen. The aim is to control the condition, relieve symptoms and help you live well.

Self-care at home

• Keep up with the vaccinations your care team recommends, and ask before having any live vaccines
• Wash your hands often and avoid close contact with people who have infections when possible
• Report any fever or feeling unwell early rather than waiting
• Stay as active as you can — gentle, regular movement helps energy levels and mood
• Eat a balanced diet and keep to a healthy weight
• Protect your skin from the sun, as CLL slightly raises the risk of skin cancer
• Attend all monitoring appointments and blood tests, even when you feel well
• Keep a simple note of symptoms so you can track changes between appointments
• Ask your doctor or pharmacist before starting any new medicine, supplement or herbal remedy

Medical treatments

Treatment for CLL is chosen based on your age, general health, the features of your leukaemia cells, and your preferences. Options include targeted medicines (tablets or infusions that block specific processes the leukaemia cells rely on to grow and survive), immunotherapy (medicines that help your immune system recognise and attack the leukaemia cells), and chemotherapy (medicines that kill fast-growing cells), often used in combination. Radiotherapy can shrink enlarged lymph nodes or a large spleen. A stem cell transplant (replacing diseased bone marrow with healthy donor cells) is an option for a small number of people, usually younger and fitter patients. Clinical trials may offer newer options. Your specialist team will explain the benefits and side effects of each choice and help you decide.

When is surgery considered?

Surgery is not used to treat CLL itself. Occasionally, an operation may be needed to remove an enlarged spleen, or a lymph node may be removed to help make the diagnosis. Most people with CLL never need surgery.

Living with this condition

Many people with CLL continue to work, travel and live much as before. You will have regular appointments and blood tests, and these may be spaced further apart if things stay stable. It helps to plan ahead for those appointments and to keep a list of questions. Tell your dentist and any other health professionals that you have CLL, because it can affect how infections and dental work are managed.

Lifestyle tips

• Stay physically active within what feels comfortable for you
• Avoid smoking and keep alcohol within recommended limits
• Get enough sleep and build rest into busy days
• Keep up with recommended vaccinations and general health checks
• Be careful with hygiene around food and when travelling
• Use good sun protection, including a hat and high-factor sunscreen
• Tell your care team about any travel plans, especially if you are having treatment

Diet and exercise

There is no special diet that treats CLL, but eating a varied, balanced diet helps you keep your strength and recover from infections. Aim for plenty of vegetables and fruit, whole grains, beans, and moderate portions of protein, and drink enough fluids. Gentle regular exercise — walking, swimming, cycling, gardening, or whatever you enjoy — helps with tiredness, mood and heart health. Start slowly and build up, and ask your care team if you are unsure what is safe for you.

Mental health and emotional wellbeing

Being told you have a blood cancer, and then possibly being monitored rather than treated, can bring a mix of worry, relief and frustration. It is very common to feel anxious before check-ups, or to find the 'watch and wait' period hard. These feelings are normal and there is no right way to feel. Talking to family, friends, your GP or a counsellor can help, and many people find comfort in support groups with others who understand. If at any point you feel you cannot cope, are very low, or have thoughts of harming yourself, please reach out straight away — contact your doctor, a crisis line in your country, or your local emergency number if you feel at immediate risk.

Prevention

There is no known way to prevent CLL, because it is not caused by anything you did or did not do. The gene changes that lead to CLL happen by chance over a person's lifetime. If you have a close relative with CLL, mention it to your doctor so they can decide whether any extra monitoring is worthwhile.

Vaccines

There is no vaccine against CLL. However, vaccines against other infections matter a lot for people with CLL, whose immune systems may be weaker. Your care team will advise on flu, pneumonia, COVID-19, shingles and other vaccinations, and on timing around any treatment. Always check before having a live vaccine.

Screening programmes

There is no national screening programme for CLL. It is sometimes picked up on a blood test done for another reason. If you have had an unexplained abnormal blood result in the past, keep your routine appointments so it can be rechecked if needed.

Complications

If left untreated

• The leukaemia may gradually crowd the bone marrow, leading to anaemia (low red cells, causing tiredness and breathlessness)
• Low numbers of infection-fighting white cells can make infections more frequent or more serious
• Low platelets can cause bruising and bleeding
• Lymph nodes, the spleen or the liver can become enlarged and uncomfortable
• Some people develop a more aggressive type of lymphoma (a cancer of the lymph system) — this is uncommon and your team watches for it
• There is a slightly higher risk of certain other cancers, including skin cancer, so your team will keep an eye on this
• The immune system can sometimes attack the body's own blood cells, causing further anaemia or low platelets

Long-term outlook

The outlook for people with CLL is generally good, and many people live for many years with the condition well controlled. Some people never need treatment, and others are treated only after a long period of monitoring. Treatment options have improved a lot in recent years, and more are being studied. Every person's course is different, so your specialist team is the best source of information about your own situation. Living with a long-term condition can be challenging, but there is good reason for hope and plenty of support available.

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