Acute leukaemia in children: symptoms, tests and treatment in the UK

Leukaemia is a cancer of the blood and bone marrow, the soft tissue inside bones where blood cells are made. The NHS describes acute lymphoblastic leukaemia (ALL) and acute myeloid leukaemia (AML) as rare types of cancer that affect the blood and bone marrow. Acute means that the disease develops quickly over weeks rather than years.

The Royal Marsden explains that in ALL, immature white blood cells called blast cells accumulate in the bone marrow and eventually reduce the production of normal red cells, white cells and platelets. That is the root of most symptoms: too few red cells causes paleness and tiredness, too few platelets causes bruising and bleeding, and too few working white cells leaves a child prone to infections.

ALL is the only form of leukaemia that is more common in children than in adults, and the Royal Marsden says it is the single most common form of paediatric cancer, about one-third of all cancers in children. The NHS says acute myeloid leukaemia (AML) can be diagnosed at any age but is more common in older people.

Cancer Research UK stresses that childhood cancer is rare and that most children with one or more of these symptoms do not have leukaemia, but they should be checked by a GP. The NHS says symptoms usually appear quite quickly over a few weeks and are not always obvious at first. Not every child has all of them, and at the start they may come and go.

• Looking pale, or more washed out than usual.

• Being very tired or weak, even after a good night's sleep.

• Bruising or bleeding easily or for no reason, nosebleeds, bleeding gums or small dark red or purple spots on the skin that do not fade under a glass.

• A high temperature or sweats, and catching infections easily and often or struggling to shake them off.

• Swollen glands in the neck, armpits or groin.

• Bone or joint pain, which may make a young child limp or refuse to walk.

• Loss of appetite, weight loss, or a swollen, uncomfortable tummy.

• Swelling of one or both testicles in boys, which is usually painless.

The NHS advice is to see a GP if you or your child have symptoms of acute lymphoblastic leukaemia, to ask for an urgent GP appointment or call 111 if a child is bleeding or bruising easily or for no reason, and to call 999 or go to A&E if you or your child have a swollen and red face, neck, arms or hands that came on suddenly, or swollen veins in the neck or chest that came on suddenly.

Cancer Research UK explains why: a type called T-cell ALL can cause swollen glands or an enlarged thymus in the chest, pressing on the windpipe, which causes breathlessness and coughing, and on the veins that carry blood from the head, which makes the face, neck and arms swell and go red. It says to take a child with these symptoms to A&E because it can be a medical emergency.

Cancer Research UK also says that guidance for GPs is clear that a parent or carer's concern about any changes should be taken into account. If your child is not themselves, trust that instinct and ask for them to be seen.

The NHS says ALL is rare but anyone can get it, and it is not always clear what causes it. It is most common in children aged 4 and under. You might be more likely to get it if you have a genetic condition such as Down's syndrome, have had certain types of chemotherapy in the past, were exposed to a lot of radiation or had radiotherapy especially in childhood, are exposed to high levels of benzene, or have a weakened immune system, for example with HIV.

The Royal Marsden says there is no single proven cause of childhood ALL. Higher exposure to ionising radiation before birth or in early life has been linked with a higher risk, one theory is that delayed exposure to a common infection may rarely lead to leukaemia, and there is no evidence that exposure to high-voltage power lines causes it. Parents are often left asking whether they did something to cause it. None of the causes or risk factors listed in the UK sources used here relate to everyday parenting choices.

The NHS says the GP may check swollen or painful areas, listen to the chest and arrange an urgent blood test, and may refer for more tests or to a hospital specialist. Sometimes a child has to go to hospital straight away, which does not mean cancer is certain.

Tests for ALL include blood tests and a bone marrow biopsy, in which a small sample is taken from the bone marrow with a needle. The NHS says young children may be given a general anaesthetic. Blood Cancer UK adds that children and teenagers are normally given a general anaesthetic so they sleep through it, and that doctors look at cells in blood and bone marrow and at genetic changes in those cells. Further tests may include a lumbar puncture to sample fluid from the lower spine, scans such as X-ray, CT, MRI or ultrasound, more blood tests and a saliva sample.

The NHS says it can take a few weeks to get all test results and that waiting longer does not necessarily mean something is wrong. A group of specialists looks after the child, including a clinical nurse specialist who is the main point of contact during and after treatment.

The NHS says ALL treatment depends on the type, the person's age and general health, usually includes steroids and chemotherapy, and may include targeted medicines, immunotherapy or a stem cell or bone marrow transplant, with supportive treatments to prevent and manage symptoms. Steroids are usually taken for up to a week before chemotherapy starts, and chemotherapy is the main treatment.

The Royal Marsden describes the usual phases of treatment for children: induction chemotherapy over about four weeks aimed at remission; post-remission therapy to destroy any remaining cells; central nervous system-directed therapy through injections of anti-cancer drugs into the spinal fluid during a lumbar puncture; and continuation or maintenance therapy with low-dose daily oral chemotherapy and monthly injections. Most of the later treatment is given as an outpatient. A bone marrow transplant is reserved for a few children, about 2 to 3%, who do not do well on standard chemotherapy or if the leukaemia comes back.

Supportive care can include antibiotics to prevent or treat infections, blood transfusions, growth factors and vaccines, according to the NHS. Common effects of chemotherapy are low blood counts, nausea, sore mouth and temporary hair loss, and the Royal Marsden notes that a small number of children develop long-term effects.

The Royal Marsden says that many children with ALL are now cured with current treatment, though the outlook depends on how well each child responds and on features of the leukaemia cells such as their chromosomes. Blood Cancer UK says the prognosis for most children and young adults with ALL is good and treatment has a very high success rate. Your child's team can give the figures that apply to their situation.

If the cancer cannot be cured, the NHS says the aim becomes limiting the cancer and its symptoms, with a palliative care or symptom control team alongside. Support is available for parents and siblings through hospital psychology and nursing teams and through charities including Cancer Research UK, Blood Cancer UK, Macmillan and the Children's Cancer and Leukaemia Group, which the NHS pages signpost.

On the NHS, a GP who suspects leukaemia arranges an urgent blood test and refers on to a hospital specialist, and a group of specialists then looks after the child, with a clinical nurse specialist as the main point of contact. NHS cancer treatment is free at the point of use. Some families seek a second opinion privately. Ask your team who coordinates care, which hospital to attend if your child develops a fever and how to reach the ward out of hours.