Leukaemia treatment journey overview in adults

Overview

Leukaemia is a cancer of the blood and bone marrow. It happens when the body makes too many abnormal white blood cells, which crowd out healthy cells. Bone marrow is the soft, spongy area inside bones where blood cells are made.

Leukaemia is not the most common cancer, but it is one of the most common blood cancers in adults. Around 10,000 people are diagnosed with leukaemia each year in the UK.

Leukaemia can affect adults of any age, but the most common type in adults is chronic lymphocytic leukaemia, which is usually diagnosed in people over 60. Acute myeloid leukaemia is more common in older adults, while acute lymphoblastic leukaemia is more common in children but can also affect adults.

Symptoms

Common symptoms

• Feeling very tired or weak
• Frequent or severe infections
• Unexplained weight loss
• Easy bruising or bleeding, such as frequent nosebleeds or bleeding gums
• Pale skin or looking paler than usual
• Night sweats or a mild fever
• Bone or joint pain
• Swollen lymph nodes in the neck, armpit, or groin

Symptoms in children

• Symptoms in children can appear suddenly and may include pale skin, tiredness, frequent infections, easy bruising, limping or refusing to walk due to bone pain, and small red spots under the skin called petechiae.

Symptoms in older adults

• In older adults, signs can be subtle and may look like normal ageing. They include ongoing tiredness, feeling breathless with mild activity, frequent infections, loss of appetite, and confusion or slowed thinking.

Causes

Main causes

• In most cases, there is no clear cause. Leukaemia happens when DNA in a blood-forming cell changes (mutates), causing it to grow out of control.
• It is not caused by anything you did or did not do. It is not contagious.

Risk factors

• Increasing age
• Certain genetic conditions, such as Down syndrome
• Previous treatment for another cancer with certain types of chemotherapy or radiation
• Exposure to high levels of radiation
• Long-term exposure to certain chemicals, such as benzene
• Smoking, which slightly raises the risk
• Being male — leukaemia is slightly more common in men
• A family history of leukaemia, though this is rare

When to see a doctor

See a doctor urgently if:

• You have a fever or signs of infection.
• You have unusual bruising or bleeding that is new or getting worse.
• You feel short of breath or extremely unwell.
• You have severe bone pain or abdominal pain.

Book a routine appointment if:

• You have been feeling unusually tired for more than a few weeks.
• You have lost weight without trying.
• You have swollen lymph nodes, night sweats, or repeated infections.
• You look paler than usual and feel weak.

Diagnosis

Doctors usually start with a complete blood count (CBC) and a blood smear. If the cells look abnormal, you will be referred to a haematologist — a doctor who specialises in blood conditions — for further tests.

Tests that may be done

• Complete blood count (CBC) — measures the levels of red cells, white cells, and platelets
• Blood smear — looks at blood cells under a microscope
• Bone marrow biopsy — a needle sample taken from the hip bone to check for cancer cells
• Flow cytometry — a special test to identify the type of leukaemia cells
• Chromosome and genetic tests — look for changes inside the leukaemia cells
• Imaging tests such as X-ray, CT, or MRI — to check for affected organs
• Lumbar puncture (spinal tap) — if doctors think leukaemia may be in the fluid around the brain and spinal cord

What to expect at your appointment

You may not need all of these tests. They help your team identify the exact type of leukaemia and plan the right treatment for you. This testing process can take a few weeks. It is normal to feel anxious during this time, and you can ask your team questions at any point.

Treatment

The treatment journey is different for everyone. Your team will create a plan based on the type of leukaemia, your age, and your general health. The goal may be to cure the disease, keep it under control for many years, or relieve symptoms and maintain quality of life. Treatments are often given in phases: induction (to bring about remission), consolidation (to keep it away), and maintenance (to prevent relapse).

Self-care at home

• Attend all appointments and write down your questions beforehand.
• Wash your hands often and avoid crowded places if your immune system is weak.
• Let your care team know right away if you develop a fever or any new symptom.
• Keep a list of your medicines and allergies.
• Have a trusted family member or friend accompany you to hospital visits if possible.
• Ask for help at home when you need it — you do not have to do everything alone.

Medical treatments

Chemotherapy is a drug treatment that kills fast-growing cells and is the backbone of many leukaemia treatments. It may be given into a vein, as tablets, or into the fluid around the spinal cord. Targeted therapy blocks specific proteins on cancer cells, and immunotherapy helps your immune system recognise and attack leukaemia cells. Radiotherapy uses high-energy rays to kill cancer cells, sometimes for leukaemia that has spread to the brain or to prepare for a transplant. A stem cell transplant replaces unhealthy bone marrow with healthy donor cells and is used in some cases to try to cure the disease. Steroids may also be used as part of anti-cancer treatment.

When is surgery considered?

Surgery is not a main treatment for leukaemia. However, you may need a small procedure to place a central line — a thin, flexible tube inserted into a large vein — which is used to give treatments and take blood samples. This is usually done under local anaesthetic.

Living with this condition

Life during and after treatment can be tiring, both physically and emotionally. It helps to keep a steady routine, plan activities around your best times of day, and let go of tasks that are not essential. Your healthcare team can advise you on when you can return to work, travel, and resume your usual activities. Many people with chronic leukaemia live well for years, taking a tablet and having regular check-ups.

Lifestyle tips

• Follow your treatment schedule exactly.
• Speak to your healthcare team before getting any vaccines.
• Avoid smoking and limit alcohol.
• Use sun protection if your skin becomes more sensitive during treatment.
• Keep good oral hygiene to reduce the risk of infection.
• Tell your care team about any new bruising, bleeding, or other changes.

Diet and exercise

During treatment, your appetite and sense of taste may change. Eat small, frequent meals and choose foods that appeal to you. Your team or a dietitian can advise on food safety, such as avoiding raw or undercooked foods when your immune system is weak. Gentle activity like short walks can help your energy and mood, but always ask your doctor before starting something new.

Mental health and emotional wellbeing

A leukaemia diagnosis and treatment can bring fear, sadness, and anxiety. These feelings are normal and not a sign of weakness. It is important to talk about how you feel — with a partner, friend, counsellor, or spiritual adviser. Many hospitals have psychology or psych-oncology staff. If you are struggling, tell your team. And if you are ever in crisis, reach out to your local mental health crisis service or your local emergency number.

Prevention

For most cases, there is no known way to prevent leukaemia. It is not caused by anything you did or did not do. Avoiding certain risk factors, such as smoking and unnecessary radiation exposure, might slightly lower the risk for some people, and a healthy lifestyle can help you feel stronger during treatment, but it cannot prevent the disease.

Vaccines

Vaccines cannot prevent leukaemia, but staying up to date with recommended vaccines can help protect you against infections that are especially risky when your immune system is weak. Always check with your cancer team before having any vaccine, because some live vaccines may not be safe during certain treatments.

Screening programmes

There is no routine blood test used to screen healthy adults for leukaemia. If you have worrying symptoms, your doctor can arrange blood tests to check.

Complications

If left untreated

• Anaemia — too few red blood cells, causing severe tiredness and breathlessness
• Serious infections that are hard to treat due to low white blood cell counts
• Severe bleeding due to low platelets
• Progressive damage to organs such as the liver, kidneys, or brain
• In acute leukaemia, these problems can become life-threatening quickly, which is why treatment is urgent.

Long-term outlook

Leukaemia is a serious illness, but there is strong reason for hope. Survival rates have improved dramatically in recent decades. Many people with acute leukaemia go into remission and stay free of the disease. Some types of chronic leukaemia can be managed effectively for years, allowing people to live full and active lives. Your own outlook depends on many personal factors, and your haematology team is the best source of information about your specific situation.

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