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100% of profits made in our charity shop help to fund neuroblastoma research.

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FAQs

What is neuroblastoma?

Neuroblastomas are cancers that start in early nerve cells (called neuroblasts) of the sympathetic nervous system. This means that tumours can be found anywhere along this system; most commonly (about 50%) start in the adrenal glands (above the kidney), or near the spine, chest, neck or pelvis.

Let's start with the name:

neuro = nerves
blastoma = a cancer that affects immature or developing cells.

So, neuroblastomas are cancers that start in early nerve cells (called neuroblasts) of the sympathetic nervous system.

This means that tumours can be found anywhere along this system; most commonly (about 50%) start in the adrenal glands (above the kidney), or near the spine, chest, neck or pelvis.

Rarely, a neuroblastoma has spread so widely by the time it is found, doctors can’t tell exactly where it started.

Some neuroblastomas grow and spread quickly, while others grow slowly.

How common is neuroblastoma?

Neuroblastoma is a rare disease with about 40 children diagnosed with neuroblastoma each year in Australia. There is a chance of 1 in 100,000 of a child suffering neuroblastoma. There appears to be no trend in an increasing number of cases in Australia.

Why does this cancer form?

There are no known reasons as to why this cancer occurs and there are no clear environmental links. There are rare cases where neuroblastoma runs in families due to a genetic mutation, but in most cases there is no known genetic cause.

There are no known reasons as to why this cancer occurs and there are no clear environmental links. There are rare cases where neuroblastoma runs in families due to a genetic mutation, but in most cases there is no known genetic cause.

How is it diagnosed?

Neuroblastoma may be difficult to diagnose as symptoms often do not become apparent until the tumour has reached a certain size. Even then symptoms may be subtle and similar to other more common non-serious childhood diseases. As a result it often takes some time before the final diagnosis of neuroblastoma is made.

Neuroblastoma may be difficult to diagnose as symptoms often do not become apparent until the tumour has reached a certain size. Even then symptoms may be subtle and similar to other more common non-serious childhood diseases. As a result it often takes some time before the final diagnosis of neuroblastoma is made.

Often parents wonder if they or a doctor should have noticed something sooner, but because it is such a rare disease it is unlikely that a family doctor will ever see a child with neuroblastoma in a lifetime of practice.

How dangerous is neuroblastoma?

Neuroblastoma is a very complex cancer and there are many different types that behave very differently. At one end of the spectrum are benign tumours that may even resolve spontaneously, while at the other end are aggressive tumours with an average survival rate of only 50%. The cure rate for these “high-risk” tumours has only improved marginally in recent years but there is clear hope that this rate will change with some new drug discoveries coming through.

Neuroblastoma is a very complex cancer and there are many different types that behave very differently. At one end of the spectrum are benign tumours that may even resolve spontaneously, while at the other end are aggressive tumours with an average survival rate of only 50%. The cure rate for these “high-risk” tumours has only improved marginally in recent years but there is clear hope that this rate will change with some new drug discoveries coming through.

More information

One of our goals as a charity is to provide practical information regarding treatment and hospital stays to neuroblastoma families through our website.

More information

One of our goals as a charity is to provide practical information regarding treatment and hospital stays to neuroblastoma families through our website.

Visit our family support area for more information regarding neuroblastoma including:

Newly diagnosed - key statistics, causes, risks, detection, diagnosis and staging

On treatment - treatments and side effects

Post treatment - late effects and relapse

Living with neuroblastoma - hospital tips, life outside hospital and once treatment has finished

Related support services

Connecting with other neuroblastoma families

Sharing your story

Please note that all content provided by Neuroblastoma Australia is of a general nature only. Any medical queries should be directed to your oncologist or medical team.

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