Stages of neuroblastoma

As with most cancers the tumour is defined by stages, which reflect the spread of disease. There are a number of staging systems, but the most widely used until recently – INSS – is shown first, with the most recent (INRG) in brackets:

  • Stages 1 and 2 (L1) – the cancer is in one site and has not spread. It may be possible to remove it completely by operation.
  • Stage 3 (L2) – the cancer has spread to local structures, but not to distant parts of the body.
  • Stage 4 – the cancer has spread to distant parts of the body.
  • Stage 4s – this special stage defines a tumour diagnosed in a baby under the age of 12 months. Although it may have spread to the liver or skin, the outlook is fairly good.

Neuroblastoma is a rare cancer that affects children. It develops from nerve cells called neuroblasts.

The cancer usually starts in the child’s abdomen (tummy). It often develops in the adrenal glands, the two small glands above the kidneys, and can spread to other areas such as the bones, liver and skin.

The cause is unknown. There are rare cases where children in the same family are affected, but it does not generally run in families.

Who is affected?

Neuroblastoma affects around 100 children each year in the UK. It usually affects children under the age of five, and can occur before a child is born. It is the most common solid tumour in childhood after brain tumours.

What are the symptoms?

The symptoms depend on where the cancer is and whether it has spread. It is often hard to diagnose neuroblastoma in the early stages, as initial symptoms are common ones – for example, aches and pains and loss of appetite.

However, the most common symptom when the cancer has developed is a lump or swelling in the child’s abdomen, as this is where the cancer usually starts. It can cause constipation and general discomfort and pain.

Other possible symptoms are:

  • a lump in the child’s neck, which can make them breathless or cause difficulty swallowing
  • bone pain and difficulty walking, if the cancer has affected their bones
  • numbness, weakness or loss of movement in the child’s lower body, if the cancer has affected their spinal cord
  • anaemia, bruising, bleeding and infections, if the cancer has affected their bone marrow
  • bluish lumps in their skin, if the cancer has spread to the skin


Because early symptoms are vague, neuroblastoma is often not diagnosed until it has spread around the body (Stage 4).

The outlook is generally better if the child is younger and the cancer is low risk (growing slowly) and at a low stage.

Babies with Stage 4s neuroblastoma who have no symptoms may not need treatment, as the cancer may go away on its own.

With all other stages of neuroblastoma, the tumour is removed by operation. Depending on the stage, chemotherapy and/or radiotherapy is sometimes used before surgery to shrink the tumour and after surgery to kill any remaining cancer cells.

It is common for the cancer to return after being treated.

Page last reviewed: 28/08/2012

Next review due: 28/08/2014


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The 3 comments posted are personal views. Any information they give has not been checked and may not be accurate.

NBmum said on 30 November 2012

In response to the comment made on 17th November 2012, which refers to the comment made on 1st February 2011, the information you see has been changed in accordance with the first comment. There were several other things on this info page that were changed in line with the first comment, of which only part is displayed here.

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Male Fern Camden said on 17 November 2012

The comment above is strange as the article on Neuroblastoma does not describe it as 'very rare', nor does it say that there are 'only 100' patients per year.

The only mention of 'rare' is in relation to Neuroblastoma running in families. Familial Neuroblastoma is very unusual.

The incidence of Neuroblastoma is described as being 'about 100' patients each year in the UK which is correct.

There is mention of Neuroblastoma being the most common childhood cancer after brain tumours, in fact, so the article does not belittle those affected or demean the importance of this disease.

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FESK said on 01 February 2011

There are a couple of things in the neuroblastoma piece i would like to see altered, as a parent of a child who had this cancer. The use of the phrases 'very rare' makes you feel very isolated when that is not the case and 'only 100' is horrible and belittles the children who are suffering. You should also have a video showing a child having chemo as it is a childhood cancer. The sentence 'radiotherapy and chemotherapy is sometimes given' is misleading as neuroblastoma stage 3 and 4 are always treated with them If you could see your way to making these changes it would be good.
A Parent

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