An image of dyed neuroblastoma cells taken through a microscope 

Clinical trials

If your child is diagnosed with neuroblastoma, you may be asked to participate in a clinical trial. Clinical trials are used to assess the effectiveness of different treatments. They aim to improve our understanding of the best way to treat an illness, usually by comparing the standard treatment with a new or modified version.

As neuroblastoma is relatively rare, it's important that there are enough people taking part in trials to ensure that the results are reliable. The UK collaborates effectively with European countries, and children in the UK with neuroblastoma can take part in national and European studies. The European research group is called SIOPEN. 

Current examples of European studies that children in the UK participate in are a trial for high-risk patients, and a trial assessing the effect of an antibody that destroys neuroblastoma cells. 

You may wish to search the database of clinical trials for neuroblastoma to see what research is currently being carried out.

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

These cells are found in a chain running down the back of the chest and stomach (abdomen).

In many cases, neuroblastoma first 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.

Neuroblastoma affects around 100 children each year in the UK. It usually affects children under the age of five, and can even occur before a child is born.

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

Signs and symptoms

The symptoms depend on where the cancer is and whether it has spread.

It's often hard to diagnose neuroblastoma in the early stages, as initial symptoms are common ones  for example, aches and pains, loss of energy and loss of appetite.

A relatively late sign is a lump or swelling in the abdomen, as this is where the cancer commonly starts. This is easy to miss in a young child. This lump can cause constipation and difficulty passing urine, as well as general pain and discomfort.

Other signs can include:

  • a lump in the neck
  • bone pain and difficulty walking, if the bones are affected
  • numbness, weakness or loss of movement in the child’s lower body, if the cancer has affected the spinal cord
  • pale skin, bruising, bleeding and frequent infections, if the cancer has affected the bone marrow
  • bluish lumps in the skin and the appearance of "black eyes"

Diagnosing neuroblastoma

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

These tests may include:

  • urine analysis tests to check for certain chemicals found in the urine that are produced by neuroblastoma cells
  • scans of various parts of the body to look for areas affected by the cancer – such as ultrasound scans, computerised tomography (CT) scans and magnetic resonance imaging (MRI) scans
  • a special type of scan involving an injection of a substance that is taken up by neuroblastoma cells anywhere in the body, called an mIBG scan
  • biopsy (removal of a tissue sample for microscopic examination) will allow the cancer to be identified  the sample is typically removed under general anaesthesic using a special needle

If the lump is in one place and safe to remove with surgery, however, then a preliminary biopsy is not necessary.

Once these tests have been completed, it will usually be possible to confirm a diagnosis of neuroblastoma and what "stage" it is at (see below).

Stages of neuroblastoma

As with most cancers, neuroblastoma is defined by stages that reflect the condition's spread. There are many staging systems, but the most widely used until recently is shown first, with the more recently agreed stages in brackets:

  • Stages 1 and 2 (L1)  the cancer is in one site and has not spread
  • Stage 3 (L2)  the cancer has spread to local structures, but not to distant parts of the body
  • Stage 4 (M)  the cancer has spread to distant parts of the body
  • Stage 4s (Ms)  this special stage is for tumours diagnosed in babies under the age of 12 months; although it may have spread to other parts of the body, the outlook is fairly good, because it can get better on its own

Treatment and outlook

The outlook for neuroblastoma is generally better if the child is younger and the cancer is confined to one site.

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

Depending on the stage, chemotherapy is usually given to shrink the tumour before it is surgically removed, followed in some cases by radiotherapy to kill any remaining cancer cells.

Almost half of neuroblastoma cases are an aggressive form and, despite very intensive treatment, the cancer may return. In these cases, further treatment will often be necessary.

Page last reviewed: 04/09/2014

Next review due: 04/09/2016


How helpful is this page?

Average rating

Based on 10 ratings

All ratings

Add your rating


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.

Report this content as offensive or unsuitable

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.

Report this content as offensive or unsuitable

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

Report this content as offensive or unsuitable

Where Next? Cancer care choices for young people

Cancer care choices for young people

Find out more about the cancer care options available for young people aged between 19 and 24.

Charlotte Esler

I had cancer at 14

Charlotte Esler was diagnosed with Hodgkin's lymphoma at the age of 14 and is now in remission. She talks about her experience