Neuroblastoma – Information, Treatment & Support

What is it?

A neuroblastoma is a cancer of the specialised neural cells. It is the most common type of solid tumour in children. It is normally found in the adrenal glands of the kidney, but can develop in the nerve tissues of the neck, chest, abdomen or pelvis.

What causes a neuroblastoma?

The causes of a neuroblastoma are unknown.

What are the symptoms?

As neuroblastomas are only found in children, the symptoms are often hard to gauge. Symptoms include (and are dependent on where the tumour is): swollen abdomen, difficulty passing urine or going to the toilet, high blood pressure, difficulty in breathing or swallowing, small blue-coloured lumps on the skin, weakness in the legs or walking unsteadily and reduced leg movements.
TIP: If these symptoms are noticed they should be checked by a doctor – but remember, they are common to many illnesses other than a neuroblastoma.

There are a number of tests used to diagnose a neuroblastoma. These may include:

  • Urine tests. Nearly all children with neuroblastoma will have substances called vanillylmandelic acid (VMA), or homovanillic acid (HVA), in their urine. Measuring this can help to confirm the diagnosis.
  • mIBG scans. mIBG (meta-iodo-benzyl guanidine) is a substance that is taken up by neuroblastoma cells. It is given by injection. Attaching a small amount of radioactive iodine to the mIBG enables the tumours to be seen by a radiation scanner. mIBG may also be used as a treatment.

If the results of the test show the presence of a medulloblastoma, a referral will be made to a doctor who specialises in the treatment of diseases of the brain, (called a neurologist), and an oncologist (cancer doctor).

Staging:

Neuroblastomas are staged to describe the size of the tumour and determine if it has spread from the original site. This is done according to the International Neuroblastoma Risk Group Staging System (INRGSS):

  • Stage L1: Tumour has not spread to the vital organs and can be removed by surgery.
  • Stage L2: Tumour has not spread to the vital organs and but can’t be removed by surgery.
  • Stage M: Tumour has spread to other parts of the body.
  • Stage MS: Tumour has spread to the skin, liver and/or bone marrow.

A team of doctors and other staff at the hospital will plan treatment. It depends on the age of the patient and the location and stage of the cancer. Treatment may involve:

Surgery for a neuroblastoma:

  • For tumours that are Stage L1, surgery is usually the first line of treatment. Some tumours might need chemotherapy to shrink them before surgery.
  • Further treatment may be required to kill any remaining cancer cells after surgery.

For more information about surgery, go to our surgery page.

Radiotherapy for a neuroblastoma:

  • If the tumour has spread or is classified as high risk, then radiotherapy may be given.
  • This can be given externally (outside the body) or internally (using radioactive mIBG).

For more information about radiotherapy, go to our radiotherapy page.

Chemotherapy for a neuroblastoma:

  • Chemotherapy may be used to shrink the size of the tumour and to get rid of any cancer cells around the body.
  • If the cancer has spread or is indicated as being high risk, then intensive chemotherapy will be used.

For more information about chemotherapy, go to our chemotherapy page.

Stem cell transplant for a neuroblastoma:

  • High dose chemotherapy destroys the cancer cells, however it also destroys healthy cells. A stem cell transplant is used to replace the destroyed cells.
  • With a stem cell transplant, cells are taken from the blood before high-dose chemo is given and then later returned after chemo.
  • In some cases a patient will receive their own stem cells back, taken prior to treatment (this is called an autologous transplant) and in others a patient will receive cells from a donor (this is called an allogeneic transplant).
  • The stem cells make their way into the bone marrow, where they grow and develop into mature blood cells over a period of 14–21 days.

To find out more, check out our stem cell transplant page.

Join CanTeen’s online community to chat with other young people about neuroblastoma, its treatment… or anything really.