Rhabdoid tumours - a new diagnosis

My child or a child I know has been diagnosed with rhabdoid tumour

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.

This leaflet is designed to be a summary of some of the information you may have been already given and it may 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 as well.

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

Malignant rhabdoid tumours – these usually occur or originate in the kidney (renal).

Extra renal rhabdoid tumours- these occur elsewhere in the body, such as in the liver, lungs, skin and other soft tissues. Confusingly, the term malignant rhabdoid tumour can also be used as a general term to describe rhabdoid tumours at other locations too (ERRT), so grouping the two types together. For example some consultants may refer to a liver (hepatic) rhabdoid tumour as a malignant rhabdoid tumour of the liver or as a hepatic extra renal rhabdoid tumour. These are the same thing.

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

Support for Rhabdoid families

When a parent hears their child has a diagnosis of a rhabdoid tumour or other very rare solid tissue tumours, it can feel overwhelming.

We have an online group where parents can provide mutual support to each other. This is a closed forum and a safe place for parents to receive support from people in the same position or who have been in the same position.

Please request to join the group and we will reply to you as soon as we can.

Request to join here