Introduction

Neuroblastoma is a cancer that grows in the cells of the nerves. Nerves are the cord-like fibres that run through the body, carrying instructions back and forth from the brain. 

The nerves tell your body what to think, feel and do.

Nerves run all through the body, so neuroblastoma tumours can be found in places like the:

  • abdomen or belly
  • pelvis or hip area
  • chest
  • neck.

50% of neuroblastomas are found in the abdomen, inside the adrenal glands.

The adrenal glands sit at the top of the kidneys and release chemicals that help your body to regulate things like:

  • metabolism – how the body changes food into energy
  • blood pressure – the amount of force needed to push blood through the body
  • stress – how the body reacts to threats or challenges.

Neuroblastomas are most common in young children. They almost always develop between the ages of five and six and are rare over the age of ten.

Signs and symptoms

Symptoms of neuroblastoma are caused by the tumour pressing on nearby tissues as it grows. Your child's symptoms can depend on where the tumour is in the body.

Symptoms can include: 

  • a lump or mass in the abdomen, neck, chest, or pelvis 
  • loss of appetite and weight loss
  • nausea and vomiting 
  • stomach pain
  • constipation – hard poo that is difficult to pass
  • diarrhoea – loose poo that is difficult to control
  • difficulty urinating 
  • black coloured eyes
  • droopy eyelids
  • pupils in the eye that do not get smaller in bright light
  • vision problems 
  • chest pains
  • difficulty breathing
  • a persistent cough 
  • pain in the bones
  • fever
  • irritability
  • feeling sleepy all the time and loss of energy
  • aches in the back
  • pain or numbness in the legs
  • limping
  • not being able to stand
  • stumbling when walking. 

Babies with neuroblastoma can also have painless, blue-coloured lumps under the skin.

See your local doctor as soon as possible if your child is showing symptoms of neuroblastoma.

Diagnosis

Your child’s local doctor will try to rule out any other illnesses first. They will:

  • take a blood test
  • take a urine test
  • take a medical and family history
  • do a physical check.

Your child will be referred to a cancer specialist, called an oncologist.

The oncologist will be able to check symptoms and diagnose neuroblastoma using:

  • ultrasound, X-ray, CT and MRI scans to see inside the body
  • a biopsy - taking a tissue sample and testing it in a lab
  • bone marrow aspiration – where a sample of liquid from the middle of a bone is taken and checked in a lab
  • MIBG scan – a scan where radioactive liquid is injected into a vein to pass through the body and show any tumours in the nerve tissue.

Treatment

Neuroblastoma is usually treated with a combination of:

  • surgery to remove the tumour
  • chemotherapy – medicine that kills cancer cells
  • radiotherapy – high doses of radiation that kill cancer cells.

Some children may also need a bone marrow transplant after treatment. 

A bone marrow transplant is when cells are taken from the liquid inside bones, filtered, and put back into the bone. These cells grow healthy, enter the bloodstream, and help the body recover and fight illness.

Treatment of neuroblastoma will depend on how severe the cancer is and whether it has spread.

  • low-risk - the doctor may wait and see if the tumour disappears on its own or needs surgery and a few months of chemotherapy 
  • medium-risk – the doctor may order surgery and 12-24 weeks of chemotherapy 
  • high-risk – the doctor may use an aggressive combination of:
    • chemotherapy
    • surgery
    • radiation
    • bone marrow transplant.  

Treatment for neuroblastoma can take up to a year or more to complete. 

Management

Cure rate

The cure rate of neuroblastoma can depend on:

  • your child’s age
  • the type of tumour
  • how much it has spread. 

It is measured by how likely a child will survive five years after treatment.

  • low-risk neuroblastoma - 5-year survival rate higher than 95%
  • medium-risk neuroblastoma - 5-year survival rate between 90% and 95%
  • high-risk neuroblastoma and older children - 5-year survival rate around 60%.

Survival rates for children with neuroblastoma are different for every child.

Support for families

A cancer diagnosis can leave families and children feeling overwhelmed, scared, anxious, and upset. Practical and emotional support during and after treatment is essential and can come from: 

  • family
  • friends
  • healthcare professionals
  • specialised support services.

Speak to your child’s treatment team for information about support services.

Disclaimer

This factsheet is provided for general information only. It does not constitute health advice and should not be used to diagnose or treat any health condition.

Please consult with your doctor or other health professional to make sure this information is right for you and/or your child.

The Sydney Children’s Hospitals Network does not accept responsibility for inaccuracies or omissions, the interpretation of the information, or for success or appropriateness of any treatment described in the factsheet.


© Sydney Children’s Hospitals Network 2024