Leukaemia treatment journey overview patient overview

Overview

Leukaemia is a cancer of the blood and bone marrow. The bone marrow is the soft, spongy tissue inside your bones where blood cells are made. In leukaemia, abnormal white blood cells grow out of control and crowd out healthy cells. This makes it harder for your body to fight infection, carry oxygen, and stop bleeding.

Leukaemia is a relatively uncommon cancer overall, but it is the most common cancer in children. Thousands of people are diagnosed each year in the UK.

Leukaemia can affect anyone, but different types are more common at different ages. Acute lymphoblastic leukaemia is most common in children, while acute myeloid leukaemia and chronic lymphocytic leukaemia are more common in older adults.

Symptoms

Common symptoms

• Feeling very tired, weak, or short of breath
• Frequent or repeated infections
• Bruising or bleeding easily, such as nosebleeds or bleeding gums
• Unexplained weight loss
• Bone or joint pain
• Swollen lymph nodes (glands) in the neck, armpits, or groin
• Night sweats and fever

Symptoms in children

• Pale skin and tiredness
• Fever that comes and goes
• Bruises or tiny red or purple spots on the skin
• Bone pain, which may cause a limp
• A swollen tummy from an enlarged liver or spleen
• Irritability or poor feeding in babies

Symptoms in older adults

• Tiredness and weakness
• Shortness of breath with little activity
• Infections that are slow to clear
• Unexplained weight loss or poor appetite
• Night sweats
• Dizziness or confusion
• Unusual bleeding or bruising

Causes

Main causes

• Leukaemia begins when the DNA inside a blood-forming cell becomes damaged, causing that cell to grow and divide in an uncontrolled way.
• The abnormal cells build up in the bone marrow and crowd out healthy blood cells.
• In most cases, the exact cause of leukaemia is unknown.

Risk factors

• Exposure to high levels of radiation
• Long-term exposure to certain chemicals, such as benzene
• Previous cancer treatment with certain chemotherapy drugs or radiation therapy
• Certain genetic conditions, such as Down syndrome
• Some inherited gene changes
• Older age, for many types
• Smoking, which increases the risk of some types

When to see a doctor

See a doctor urgently if:

• Unexplained bruising or bleeding
• A fever that does not go away
• Bone pain that makes it hard to do normal activities
• Shortness of breath, paleness, or unusual tiredness
• Unexplained weight loss, drenching night sweats, or swollen glands

Book a routine appointment if:

• If you have felt tired, weak, or had repeated infections for several weeks
• If any symptom is new, persistent, or getting worse

Diagnosis

Doctors start by taking a detailed history and doing a physical examination. They will take blood samples and look at the cells under a microscope. If the blood tests suggest leukaemia, you will be referred to a specialist doctor called a haematologist. The specialist will usually arrange a bone marrow biopsy to confirm the diagnosis.

Tests that may be done

• Full blood count and blood film to check the number and appearance of blood cells
• Bone marrow biopsy, a small sample of marrow taken from the back of the hip bone with a thin needle
• Genetic and molecular tests on the sample to look for specific changes in the cells
• Lumbar puncture (spinal tap) to check for leukaemia cells around the brain and spinal cord
• Imaging tests such as a chest X-ray or CT scan

What to expect at your appointment

A specialist team will guide you through every step. You will have several appointments and tests before treatment starts. This waiting period can feel stressful, but it helps your team choose the most effective and safe treatment for you. You will be assigned a clinical nurse specialist who can answer questions and support you.

Treatment

The treatment plan depends on the type of leukaemia, your age, your overall health, and how the disease is affecting you. Treatment is usually given in phases: first to bring the disease under control, then to get rid of any remaining cells, and finally to stop the disease from coming back. Your team will explain your options and update the plan as needed.

Self-care at home

• Attend all appointments and follow the instructions from your care team
• Wash your hands often and avoid people who are sick, especially when your blood counts are low
• Get enough rest and let others help you with daily tasks
• Keep a diary of side effects and symptoms to show your team
• Tell your team about any new symptoms right away

Medical treatments

The main treatment for most types of leukaemia is chemotherapy, which uses powerful medicines to kill cancer cells throughout the body. Other common approaches include targeted therapies that attack specific changes in leukaemia cells, immunotherapy that helps your immune system recognise and destroy the cancer, steroids to reduce leukaemia cells and inflammation, radiation therapy to treat areas where leukaemia has built up, and a stem cell transplant to replace damaged bone marrow with healthy stem cells. The exact combination of treatments varies from person to person.

When is surgery considered?

Surgery is not used to remove leukaemia itself. However, some people have a minor operation to place a central line, which is a thin, flexible tube inserted into a large vein in the chest. This makes it easier to give treatments and take blood samples safely. In rare cases, an operation may be needed to remove an enlarged spleen that is causing severe symptoms.

Living with this condition

Living with leukaemia means learning a new routine. Some days you may have energy, and other days you may need rest. Try to focus on one day at a time. Keep a calendar for appointments and medicines, and let family and close friends know how they can help.

Lifestyle tips

• Keep taking care of your teeth and gums, but tell your dentist you have leukaemia
• Avoid smoking and limit alcohol, especially during treatment
• Protect your skin from the sun, as some treatments make your skin more sensitive
• Speak to your team before using any vitamins, supplements, or herbal remedies
• Stay connected with people who make you feel supported

Diet and exercise

Eat a varied diet with fruit, vegetables, protein, and whole grains if you can. If your appetite is low, eat small meals and snacks throughout the day, and ask to see a dietitian. Gentle exercise such as walking, stretching, or light yoga can improve energy and mood, but always check with your team about what is safe for you, especially when your blood cell counts are low.

Mental health and emotional wellbeing

A leukaemia diagnosis can bring anxiety, sadness, anger, and fear. These feelings are normal and can change day by day. Talking to a counsellor, psychologist, or someone you trust can help. If you ever have thoughts of harming yourself, call your local emergency number or go to the nearest emergency department right away.

Prevention

Most cases of leukaemia cannot be prevented, because the cause is usually not known. You can reduce your risk by not smoking, avoiding harmful chemicals, and limiting exposure to unnecessary radiation, but these steps cannot guarantee you will never develop leukaemia.

Vaccines

There is no vaccine that prevents leukaemia. However, staying up to date with recommended vaccinations, such as the flu vaccine, is important for your general health. Before having any vaccine, talk to your leukaemia team.

Screening programmes

There is no routine screening test for leukaemia in people who have no symptoms. If you have an increased risk due to a genetic condition or previous treatment, talk to your doctor about any check-ups that may help.

Complications

If left untreated

• Severe anaemia, causing extreme tiredness and shortness of breath
• Serious or life-threatening infections
• Uncontrolled bleeding inside the body
• Spread of leukaemia cells to the brain, spinal fluid, skin, or other organs

Long-term outlook

Leukaemia is a serious condition, but outcomes have improved greatly in recent years. Many people are cured, and others live long and satisfying lives with ongoing treatment. Children with the most common form of leukaemia have very high survival rates, and new treatments continue to improve results for adults. Your specialist can give you a clearer picture based on your exact type and situation.

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