Neuroblastoma

On this page:

What is neuroblastoma?
Symptoms
Diagnosis
Staging and risk groups
Treatment for neuroblastoma
More information about neuroblastoma

What is neuroblastoma?

Neuroblastoma is a rare childhood cancer. It begins in very early nerve cells that are left over from development in the womb. These early cells are called neuroblasts. When these cells grow in an uncontrolled way, they can form a tumour.

The word "neuroblastoma" describes how the cancer forms:
Neuro – nerves
Blast – developing or immature cells
Oma – a lump or tumour

Where does neuroblastoma occur?

Neuroblastoma can start anywhere in the body.

It most often begins in:
• The tummy (abdomen)
• The adrenal glands (small organs above the kidneys)
• The nerve tissue that runs alongside the spine

In some children, the cancer can spread to the bone marrow, bones, lymph nodes, or skin.

What causes neuroblastoma?

Doctors do not yet know exactly why neuroblastoma develops.

We do know that:
• It is not caused by anything a parent or child has done.
• It is not caused by pollution or environmental factors.
• Only a small number of cases are linked to inherited conditions.

Most cases are likely caused by changes during early development that lead cells to grow in a way they should not.

Information video: high-risk neuroblastoma

We offer a short animation, created as part of the SIOPEN High-Risk Neuroblastoma 2 trial, to help families understand high-risk neuroblastoma.

Information for parents and carers

The Children’s & Young People’s Cancer Association (CCLG) has created a helpful guide for families. It explains neuroblastoma, treatment options, and possible side effects in plain language.

You can download a digital version or order a free printed copy.

Symptoms of neuroblastoma

A common symptom is a lump or swelling in the tummy, which may be painful. Sometimes a lump can appear in the neck.

Other possible symptoms include:

Fever
Pain in the bones or joints
Limping or difficulty walking
Tiredness or weakness
Poor appetite or weight loss

Sweating
Bruising
Constipation
Blue coloured lumps under the skin

These symptoms are common in many childhood illnesses. This means neuroblastoma can be difficult to spot early.

What should I do if I’m worried?

If your child has symptoms that concern you, contact your GP. Your GP may refer your child to a specialist. Having these symptoms does not mean your child has neuroblastoma.

Diagnosis

Your GP may refer your child to:
• A paediatrician (children’s doctor), or
• A paediatric oncologist (children’s cancer specialist)

These specialists may arrange tests to confirm whether neuroblastoma is present and to plan treatment.

Common diagnostic tests include:
• Urine tests – check for chemicals made by neuroblastoma cells.
• CT, MRI or ultrasound scans – show detailed images inside the body.
• MIBG scan – uses a small amount of dye that attaches to neuroblastoma cells to make them visible in scans.
• Biopsy – a small sample of tissue is removed and examined.
• Bone marrow biopsy – checks whether the cancer has spread to the bones.
• Xrays – look for changes in the bones.

Some tests may require a general anaesthetic to help your child stay still.

Your child may have several tests on the same day, and may need additional tests during treatment.

What to expect after diagnosis

Hearing your child has cancer can feel frightening and overwhelming. It is normal to feel shock, confusion, or fear.

Please remember:
• It is not your fault.
• Nothing you did or didn’t do caused the cancer.
• Many parents have never heard of neuroblastoma before diagnosis.

You may meet several doctors, nurses and specialists. They are experienced and will understand that families may need some time to absorb what has happened. Nobody is expected to understand complicated cancer treatments straight away and health professionals are very used to having to repeat themselves and rephrase things in a way that helps parents to understand. It is very common to find it difficult to take in and remember information for a length of time after diagnosis.   

Where can I go for help?

Our Family Support Service is here for you. Our team are parents who have lived experience of neuroblastoma and truly understand what you are going through.

Contact us:
• Use the form below
• Call 0207 284 0800
• Email support@solvingkidscancer.org.uk

You can also find resources for newly diagnosed families in our Support Hub.

Family Support contact form

Staging and risk groups

This information helps explain how doctors understand the cancer and choose treatment.

- Stage 1 (INRG L1): Local tumour; can be fully or almost fully removed.
  Stage 2 (INRG L1): Local tumour; cannot be fully removed because of its position.
  Stage 3 (INRG L2): Tumour has spread to nearby lymph nodes but not far away.
  Stage 4 (INRG M): Cancer has spread to distant parts of the body.
  Around half of children have disease that has already spread by the time of diagnosis, so whilst it may be alarming to be diagnosed at Stage 4, this is not uncommon due to the nature of neuroblastoma which makes it difficult to spot.   
  Stage 4S (INRG stage MS): Occurs only in children under 18 months; limited spread and can sometimes shrink on its own.
- Low risk – Usually stage 1 and some stage 2 in children under 12 months.
  Intermediate risk – Often stage 3 and some stage 4 in young children without high-risk genetic features.
  High risk – Usually includes stages 2 (INRG stage L1), 3 (INRG stage L2), and 4 (INRG stage M) where the patient is older than 12 months and/ or has unfavourable features in the genes of their tumour.

Treatment for neuroblastoma

Treatment depends on the stage, risk group, tumour location, the child’s age, and how the tumour responds. Treatment can vary a lot between children. The medical team will plan what is best for your child.