If you are reading this page, the likelihood is that your child or a child close to you has recently been diagnosed with a rhabdoid tumour.

Finding out that your child has cancer of any type is devastating to hear, but particularly when it is an especially rare tumour type, such as a rhabdoid tumour.

The booklets linked below are designed to be a summary of some of the information you may have been given and it could answer some of your questions. If you have any further worries or questions, please discuss them with the healthcare team looking after your child.

What is a rhabdoid tumour?

A rhabdoid tumour is a rare childhood cancer that often starts in the kidneys, but can occur in the brain, spine and other soft tissues in the body. Often rhabdoid tumours affect younger children and babies, but they can affect children of any age. 

There are 3 main types of rhabdoid tumours, grouped together by the locations in which they originate:

  1. Renal rhabdoid tumours – these usually occur or originate in the kidney (renal).
  2. Extra renal rhabdoid tumours- these occur elsewhere in the body, such as in the liver, lungs, skin and other soft tissues.

  3. Atypical teratoid / rhabdoid tumours (AT/RT) which affect the brain and spine.

For more information and links to our information publications on each of the above tumour types, please see the links below.

Renal rhabdoid tumours

Malignant renal rhabdoid tumours are tumours that occur in the kidney (renal). They are rare renal tumours that mostly affect infants and very young children.

Often, on scans, a malignant rhabdoid tumour looks similar to a Wilm's Tumour or other renal tumours. It is not until the cells of the tumour are examined under a microscope that a rhabdoid tumour diagnosis can be made. Your child may have received this diagnosis following a biopsy or the removal of the tumour.

This publication will give you more information on the condition and should be used alongside information from your child's medical team.  It is not a substitute for medical advice.

Atypical teratoid rhabdoid tumours

Atypical teratoid / rhabdoid tumours (AT/RT) - these affect the brain and spinal cord (central nervous system)

Although a very rare type of brain and spinal tumour in older children, they are a more common brain tumour type in children under the age of three.

On scans, atypical teratoid / rhabdoid tumours look similar to other tumour types. It is not until the cells of the tumour are examined under a microscope that a rhabdoid tumour diagnosis can be made. Your child may have received this diagnosis following a biopsy or the removal of the tumour.

This publication will give you more information on the condition and its treatments and should be used alongside information from your child's medical team.  It is not a substitute for medical advice.

 

Extra renal rhabdoid tumours

Extra renal rhabdoid tumours (ERRT) occur in other locations away from the kidneys. 

They may occur in the liver, lungs, skin and other locations as well. 

Often on scans (dependending on their location), extra renal rhabdoid tumours can look similar to other tumour types. It is not until the cells of the tumour are examined under a microscope that a rhabdoid tumour diagnosis can be made. Your child may have received this diagnosis following a biopsy or the removal of the tumour.

This publication will give you more information on the condition and its treatments and should be used alongside information from your child's medical team.  It is not a substitute for medical advice.

 

The genetics of rhabdoid tumours

The majority of cancers occur due to chance or a combination of factors. This is the same for rhabdoid tumours. 

Most rhabdoid tumours in children occur simply due to chance, but some also can occur as a result of a genetic changes. 

This publication will give you more information on the condition and its treatments and should be used alongside information from your child's medical team.  It is not a substitute for medical advice.

 

Rhabdoid parents support group

We also run an online rhabdoid parents support group for the parents and primary carers of children affected by rhabdoid tumours. This has become an international group which helps provide mutual as well. 

Request to join the rhabdoid parents support group

If you would like a little more information before joining, go to the contact us button at the bottom of the page and send us a message.