Neuroblastoma: symptoms, tests and treatment in children

Cancer Research UK says the most common symptom is a lump in the tummy (abdomen). This could make your child's tummy swell, causing discomfort or pain, and some children may get constipation.

Other symptoms depend on where the neuroblastoma starts and whether it has spread. Cancer Research UK lists numbness, weakness or loss of movement in the lower part of the body, breathlessness, difficulty swallowing, bone pain or a limp, and Horner syndrome, which causes a drooping eyelid, a small pupil and less or no sweating on one side of the face.

In around half of children the neuroblastoma has spread to another part of the body at diagnosis. Cancer Research UK says bone pain is a common symptom, though some symptoms can be vague, such as tiredness, fever and loss of appetite.

Neuroblastoma is a cancer that starts in immature nerve cells called neuroblasts. Cancer Research UK says it often starts in the tummy, commonly in the adrenal glands or the nerve tissue at the back of the abdomen, and can spread through the blood and lymphatic system to lymph nodes, bones, liver, skin and bone marrow.

It mostly affects children under 5 and around 100 children aged 0 to 14 are diagnosed each year in the UK. Cancer Research UK says we do not know exactly what causes it. In some cases there is a family history, but these cases are very rare, and parents should not blame themselves for anything they did or did not do.

Cancer Research UK says to take your child to see a GP first. Having one of these symptoms does not mean your child has neuroblastoma, because they can be symptoms of other things, but any changes should be checked.

It says that in England and Wales a GP should refer your child to a specialist within 48 hours (2 days) if they have a lump in the tummy or an unexplained enlarged or swollen organ in the abdomen. Make another appointment if symptoms do not get better or you notice new or unusual symptoms.

Cancer Research UK says a child will need a number of tests if the doctor suspects neuroblastoma. Some tests are done with the child drowsy (sedation) or asleep (general anaesthetic), so they can keep still.

• Blood tests and a sample of pee to check for chemicals called catecholamines, which neuroblastoma cells often make.

• Ultrasound of the tummy, chest X-ray, MRI scan and CT scan.

• An mIBG scan and a PET-CT scan.

• A bone marrow biopsy and a biopsy of the tumour, taking cells to look at under a microscope.

Cancer Research UK says doctors group children into low, intermediate and high risk, according to the risk of the cancer coming back after treatment. They use the International Neuroblastoma Risk Group Staging System. Stage L1 is a cancer in one area that can be completely removed; L2 is in one area but has features that make surgery unsafe; stage M has spread to distant parts of the body; and stage MS applies to children under 12 months with spread to the skin, liver or bone marrow but not bone, lung or the central nervous system.

Age, how mature the cells look under a microscope, stage and gene changes all affect the risk group. Tumours with too many copies of the MYCN gene are nearly always high risk. Infants from 2 months and children younger than 12 to 18 months are generally lower risk.

Cancer Research UK says treatment is planned in one of the major children's cancer centres, where teams of specialists know about neuroblastoma. The main treatments are surgery, chemotherapy, radiotherapy and immunotherapy, and the plan depends on the child's risk group, age and stage.

Cancer Research UK says more children are surviving neuroblastoma as treatments have improved over the last 20 years, and that there are possible long-term effects of treatment that the team will talk through with families. It also has information on organisations and resources that can help families cope with the diagnosis.

Children's cancer centres have specialist nurses and play specialists who help children prepare for tests and treatment. Ask your child's team who to contact between appointments.

In the NHS, a child with a suspected cancer is seen urgently by a GP and a paediatrician and then by a children's cancer team (paediatric oncologists). Treatment is planned and mostly delivered in a principal treatment centre, with some care at a hospital closer to home.

Because childhood cancer treatment is highly specialised and delivered by multidisciplinary teams, ask your child's consultant or clinical nurse specialist who coordinates care between the specialist centre and your local hospital, and who to contact between appointments.