Neuroblastoma tumours can occur in any part of the body but are most common in the adrenal glands. These glands are found above the kidneys. They 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.
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.
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. Sometimes children can suddenly complain of pain in their limbs and develop some tingling and weakness if the tumour is pressing on the spinal cord.
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.
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). Another factor that will be taken into account when deciding treatment is the genetic make up of the neuroblastoma cells.
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.
If your child is undergoing chemotherapy, he or she may experience 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 sunburn 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 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.
Once your child’s risk of relapse has reduced, ongoing follow-up will focus on looking out for potential long-term side effects of treatment. The risk of this 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 ongoing investigations that your child will require.
Many people are at low risk of future health problems but some will have significant ongoing health needs. Talk to your child’s specialist about the potential long-term side-effects of their treatment.
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Updated November 2017, next review due 2019.