Neuroblastoma

About neuroblastoma

Neuroblastoma most commonly occurs in one of the adrenal glands situated above the kidneys, or in the nerve tissue that runs alongside the spinal cord in the neck, chest, tummy or pelvis.

It can spread to other organs such as:

• the bone marrow
• bones
• lymph nodes
• liver
• skin

It affects around 100 children each year in the UK and is most common in children under the age of five.

The cause is unknown.

There are very rare cases where children in the same family are affected, but generally neuroblastoma doesn't run in families.

Symptoms of neuroblastoma

The symptoms of neuroblastoma vary depending on where the cancer is and whether it has spread.

The early symptoms can be hard to spot, and can easily be mistaken for those of more common childhood conditions.

Symptoms can include:

• a swollen painful tummy, sometimes in association with constipation and difficulty passing urine 
• breathlessness and difficulty swallowing
• a lump in the neck
• bluish lumps in the skin and bruising, particularly around the eyes
• weakness in the legs and an unsteady walk, with numbness in the lower body
• fatigue, loss of energy, pale skin, loss of appetite and weight loss
• bone pain, a limp and general irritability
• rarely, jerky eye and muscle movements

See your GP or contact the GP out of hours service if you're worried your child might be seriously ill.

Tests for neuroblastoma

A number of tests may be carried out if it's thought your child could have neuroblastoma.

These tests may include:

• a urine test – to check for certain chemicals produced by neuroblastoma cells that are found in urine
• scans – such as ultrasound scans, CT scans and MRI scans of various parts of the body
• MIBG scan – this involves the injection of a substance taken up by neuroblastoma cells 
• a biopsy – the removal of a sample of cells from the tumour tissue, for examination under a microscope, so the type of cancer can be identified
• bone marrow biopsies – to see if there are cancer cells in the bone marrow

Once these tests have been completed, it will usually be possible to confirm if the diagnosis is neuroblastoma and what stage it is at.

Treatment and outlook for neuroblastoma

The main treatments for neuroblastoma are:

• surgery to remove the cancer – sometimes this may be all that's needed
• chemotherapy – this may be the only treatment needed or it may be given to shrink the cancer before surgery
• radiotherapy – this may sometimes be used after surgery to destroy any remaining cancer cells in the affected area
• high-dose chemotherapy followed by a stem cell transplant – where stem cells from your child are collected, frozen and stored before intensive chemotherapy, and are given back to them afterwards
• immunotherapy – where a medication that directly targets the neuroblastoma cells is given, although this isn't used routinely yet

The outlook for neuroblastoma varies considerably, and is generally better for younger children whose cancer hasn't spread.

Your doctors will be able to give you more specific information about your child.

In general, five years after diagnosis and treatment, the survival rates for neuroblastoma are 50 to 90 per cent, depending on how far the cancer has spread when it is diagnosed.

Almost half of neuroblastomas are a type that can return, despite intensive treatment. Further treatment will often be necessary in these cases.

Support groups and charities

Being told your child has cancer can be a distressing and daunting experience. 

You may find it useful to contact a support group or charity, such as:

• Cancer Research UK
• Children's Cancer and Leukaemia Group
• Children with Cancer UK
• CLIC Sargent
• Macmillan Cancer Support
• Neuroblastoma UK
• Solving Kids' Cancer

These are good sources of further information and advice. They may also have local support groups in your area where you can meet up with other parents.

Clinical trials

If your child is diagnosed with neuroblastoma, you may be asked to take part in a clinical trial.

Clinical trials are used to assess the effectiveness of different treatments.

If you're interested, ask your doctors about any trials your child may be able to take part in.

More useful links

• How to use your health services