Leukaemia treatment journey overview in teenagers

Overview

Leukaemia is a cancer of the blood and bone marrow. The bone marrow is the soft sponge-like tissue inside your bones where blood cells are made. In leukaemia, the bone marrow produces too many abnormal white blood cells that don't work properly. These crowd out healthy cells, causing problems like tiredness, infections, and bleeding.

Leukaemia is the most common cancer in teenagers, but it is still an uncommon illness. Around 1 in 100,000 teenagers develops leukaemia each year.

Leukaemia can affect any teenager, no matter their background or gender. It can happen at any age during the teen years, but it is slightly more common in younger teenagers.

Symptoms

Common symptoms

• Feeling very tired or weak
• Getting frequent infections or fevers
• Bruising or bleeding easily
• Pale skin
• Bone or joint pain
• Swollen lymph nodes in the neck, armpits, or groin
• Weight loss without trying

Causes

Main causes

• In most cases, the exact cause is not known.
• Leukaemia happens when changes in the DNA of blood cells cause them to grow out of control.
• These changes are usually not inherited and are not caused by anything the teenager or their family did.

Risk factors

• Previous treatment with certain chemotherapy drugs or radiation therapy
• Certain genetic conditions, such as Down syndrome
• Exposure to high levels of radiation
• A brother or sister with leukaemia (though this is very rare)

When to see a doctor

See a doctor urgently if:

• If your teenager has any of the emergency symptoms listed above, call their doctor or local emergency number right away.
• If symptoms like severe tiredness, bleeding, or bone pain are getting worse, see a doctor within a day or two.

Book a routine appointment if:

• If your teenager has been feeling unusually tired or getting more infections than normal, book a routine appointment with your family doctor.
• If you notice any bruising or spots that don't go away, a routine check-up is a good idea.

Diagnosis

If a doctor suspects leukaemia, they will arrange a blood test first. If that test shows abnormal cells, the doctor will refer your teenager to a specialist (a haematologist) at a children's or young adult cancer centre. More tests will be done to confirm the diagnosis and find out what type of leukaemia it is.

Tests that may be done

• Complete blood count (CBC) – a simple blood test to check the number of red cells, white cells, and platelets
• Peripheral blood smear – when a drop of blood is looked at under a microscope
• Bone marrow aspiration and biopsy – doctors take a small sample from inside the hip bone to examine the cells
• Genetic and molecular tests – to look for specific changes in the leukaemia cells
• Lumbar puncture (spinal tap) – to check if leukaemia cells are in the fluid around the brain and spinal cord

What to expect at your appointment

The tests can feel uncomfortable and sometimes scary, but the medical team will explain each step and use numbing medicine to reduce pain. You will be in a hospital or treatment centre, and a parent or trusted adult can usually stay with your teenager. Results may take a few days, and the team will talk you through what they mean.

Treatment

Treating leukaemia in teenagers is a journey that usually lasts several years. It is divided into phases: initial treatment to get rid of as many leukaemia cells as possible, followed by more treatment to stop the leukaemia from coming back. The exact plan depends on the type of leukaemia and how well it responds. The goal is to cure the leukaemia, and for most teenagers this is possible.

Self-care at home

• Take all medicines exactly as prescribed by your care team
• Keep a diary of symptoms and side effects to share with your doctors
• Wash your hands often and avoid people who are sick to reduce the risk of infection
• Get plenty of rest and try to keep a normal sleep routine
• Talk to your care team if you have any worries or new symptoms

Medical treatments

Treatment for leukaemia usually includes chemotherapy – drugs that kill cancer cells. These drugs are given in cycles, with rests in between. Some teenagers also have targeted therapy that attacks specific proteins in cancer cells. In some cases, radiotherapy (high-energy rays) is used to treat areas where leukaemia has spread. If the leukaemia is high-risk or comes back, a stem cell transplant may be offered – this is when a donor's healthy blood stem cells are given to your teenager to rebuild their bone marrow. Your child's team will explain all options in detail, and you can ask questions at any time.

When is surgery considered?

Surgery is not a main treatment for leukaemia itself. Occasionally, a small operation is needed to insert a central line – a thin tube into a large vein – to make giving chemotherapy and taking blood tests easier. This is a simple procedure done under anaesthetic.

Living with this condition

Life during leukaemia treatment changes from day to day. Your teenager may have hospital visits several times a week, and there will be times when they feel unwell. Many teenagers are able to continue school with extra support, or they may have a hospital tutor. It helps to keep a flexible routine and focus on one day at a time.

Lifestyle tips

• Try to keep social connections, even if it is just a video call with friends
• Find relaxing activities like reading, listening to music, or creative hobbies
• Encourage gentle movement like short walks on days when your teenager feels well
• Keep a small bag packed for hospital stays with favourite items and comfort things

Diet and exercise

Eating well is important during treatment. The hospital dietitian can help if your teenager has a poor appetite or nausea. It is usually safe to eat most foods, but sometimes there are food safety rules, so ask your care team. Exercise is not always possible, but light activity can help maintain strength and mood. Let your teenager decide what feels right for them.

Mental health and emotional wellbeing

The emotional side of a leukaemia diagnosis is huge. Your teenager may feel scared, angry, sad, or lonely. These feelings are normal. It is very important to have someone to talk to – a parent, a friend, a counsellor, or a hospital psychologist. If your teenager ever has thoughts of harming themselves, get help right away from a mental health emergency service or your local emergency number.

Prevention

Most cases of leukaemia cannot be prevented. The DNA changes that lead to leukaemia happen randomly and are not caused by anything you or your teenager did. There are no known lifestyle changes that can stop leukaemia from developing.

Vaccines

There is no vaccine against leukaemia. However, keeping up with recommended vaccines, like flu and pneumococcal vaccines, can help protect your teenager because they are more likely to get infections during treatment. Always check with your care team before giving any vaccine during treatment.

Screening programmes

There is no routine screening test for leukaemia in teenagers. It is found when symptoms appear and a blood test is done.

Complications

If left untreated

• Leukaemia can spread to other organs, including the brain and spinal cord
• Healthy blood cell levels fall, leading to severe anaemia, dangerous bleeding, and life-threatening infections
• It can cause organ damage and eventually be fatal

Long-term outlook

The outlook for teenagers with leukaemia is better today than ever before. With modern treatment, many teenagers are completely cured and go on to live full, healthy lives. The journey is long and hard, but most families say that the support from their medical team and each other makes it possible. Every person's experience is different, and your team will give you an honest outlook based on your teenager's specific situation.

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