Ependymoma in children

Ependymomas usually start from ependymal cells. These cells line the fluid filled areas of the brain (ventricles) and the spinal cord.

Ependymomas are most common in children under 5 years old. They are also more common in boys than in girls.

Around 30 children are diagnosed with ependymoma every year in the UK.

Tests

The first tests your child might have are:

• an MRI scan

• a CT scan

They might also have a lumbar puncture, but this is usually done after surgery. A lumbar puncture is a test to check for cancer cells in the fluid that surrounds the brain and the spine. This fluid is called cerebrospinal fluid (CSF). Your child’s doctor or specialist nurse will take a sample from the fluid around their spine.

For some types of test, including a lumbar puncture, your child might need ​sedation​ or a ​general anaesthetic​ . This is to help them lie still.

We have information about tests for children’s brain tumours and how to prepare

Types and grades

For most types of brain tumours doctors usually look at the cells under a microscope. This usually gives the doctor an idea if the tumour is slow or fast growing. This is called the grade. But for ependymomas, the appearance of cells under the microscope does not always fit with their behaviour. So, the grade may not tell you much about how likely the tumour is to grow or spread.

Read more about grades of brain tumours in children

Researchers are learning more about ependymoma all the time. As a result, ependymoma is now grouped by what the cells look like under a microscope and where the tumour is in the brain. They have also picked up changes (mutations) in the tumours to help understand them more.

There are 4 main types of ependymoma. These are:

• Posterior fossa ependymoma – this is the most common type

• Supratentorial ependymoma

• Spinal cord ependymoma

• Subependymoma – this is a slow growing tumour and is more likely to affect adults than children

Some of these types are further divided into sub types. These depend on changes to ​genes​ in the tumour.

Talk with your child’s doctor about their type of ependymoma. And what this means for your child’s treatment plan.

Surgery

The exact type of surgery your child needs depends on where the ependymoma is in their brain. The surgeon will aim to remove as much of the tumour as possible during surgery. Your child will have a scan after surgery. Some children might be able to have more surgery to remove more of the remaining tumour. 

Hearing that your child needs brain surgery (neurosurgery) can feel very scary. We have more information written for parents and carers about this type of surgery.

Read more about surgery

Treatment for ependymoma that has come back

It is more difficult to treat ependymoma that has come back. Treatment depends on what your child had first time round. Depending on the situation they might have:

• surgery to remove the tumour or get rid of as much of it as possible

• radiotherapy

• chemotherapy

Or they may suggest your child has treatment through a clinical trial.

Your child’s specialist will talk with you about the possible treatments for your child. They will involve you in any decisions about their treatment and care. Ask them any questions you have.

Side effects of treatment for ependymoma

The side effects of treatment are different for each child. Some side effects of chemotherapy and radiotherapy happen during treatment and go away once treatment is over. Other side effects happen months or years after treatment. These are known as late effects or long term effects. They can be mild or more challenging. Not all children have challenging long term side effects.

A team of specialists closely monitors your child after treatment. This is to help with any long term side effects.

The side effects of radiotherapy might lead to problems at school or with your child meeting their developmental milestones.

We have detailed information on follow up and late effects of treatment, what treatments can help and where to get support.

Follow up and late effects

Coping when your child has a brain tumour

We have information about where to get help and support when your child has a brain tumour.

Find out more here