Neuroblastoma

Neuroblastoma is a cancer of a particular type of nerve cells, called neural crest cells. These are cells involved in the development of the nervous system and other tissues.

Neuroblastoma tumours can occur in any part of the body, but are most common in the adrenal glands. These are glands that are found above the kidneys that release hormones to maintain blood pressure and help us respond to stress. Neuroblastoma tumours are also sometimes found in the nerve tissue alongside the spinal cord in the neck, chest, abdomen or pelvis.

Who does it affect?

Neuroblastoma is a cancer that affects children, most frequently those under 5 years old. Around 100 children are diagnosed with neuroblastoma every year in the UK.

What are the symptoms?
How is it diagnosed?
How is it treated?
What are the treatment side-effects?
After treatment

What are the symptoms?

The symptoms of neuroblastoma will depend on where the tumour is located. If it is the abdomen, you may notice that your child has a swelling in this area. If it is the adrenal glands, they may have high blood pressure. Your child may have a cough if the tumour is in the chest or difficulty swallowing if the tumour is in the neck.

How is it diagnosed?

A child will be usually diagnosed with neuroblastoma following a variety of tests including an MRI scan, MIBG scan, bone marrow examination and blood tests. Your child will also need to have a urine test. This is because most children with this condition will have increased levels of vanyllylmandelic acid (VMA) and homovanillic acid (HVA) in their urine. This is a good indicator of the disease and success of the treatment, as levels will fall when the treatment starts to work.

A biopsy of the tumour will also be taken. This is where a sample of the tumour is taken and examined under a microscope to determine the stage of the disease.

How is it treated?

In children under one year of age, neuroblastoma behaves differently and the tumour may shrink by itself or remain harmless without needing any treatment. Your child will be closely monitored for any changes in their condition.

In older children, neuroblastoma is treated using surgery, chemotherapy and radiotherapy. The exact treatment that your child receives will be determined by the location of the tumour, its size and spread (known as its stage) as well as how fast it is growing (its grade). In many cases the cancer has spread before it is diagnosed.

The most common treatment for neuroblastoma is surgery to remove the tumour. If the tumour has spread or is growing fast, a combination of surgery and chemotherapy may be used. Chemotherapy involves targeting the cancer cells with anti-cancer drugs. If it has spread to other parts of your child’s body, high-dose chemotherapy with stem cell support or radiotherapy may be used.

What are the treatment side-effects?

If your child is undergoing chemotherapy, he or she may experience side-effects such as tiredness, sickness, diarrhoea and temporary hair loss. Your child will also be at greater risk of infections.

Radiotherapy can also make your child feel tired and sick. He or she might experience skin irritation similar to sun burn and hair loss in the area that is being treated. Talk to your specialist or nurses about how you can manage these side-effects, or see the side-effects section of our website for more information.

After treatment

Follow up

After your treatment is complete your child will still need to be seen regularly at an outpatient clinic. At this clinic, your child’s specialist will be looking for any signs that the cancer has returned (this is known as a relapse). They will also check that your child’s major organs, such as the heart and lungs, are still functioning correctly and haven’t been affected by the cancer treatment.

Long-term follow up

Once your child’s risk of relapse has reduced, the focus of on-going follow up changes to looking out for potential long term side effects of treatment. The risk of long term side effects depends on the type of cancer your child had and the treatment received. A personalised surveillance plan is usually created that outlines the specific long term follow up and on-going investigations that your child will require.

Many people are at low risk of future health problems but some will have significant on-going health needs. Talk to your child’s specialist about the potential long-term side-effects of their treatment.

Updated January 2015, next planned review 2017.

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