Medulloblastoma

Medulloblastoma is the second most common brain tumour in children. It’s the most common malignant (high grade) children’s brain tumour.

Around 52 children are diagnosed with medulloblastoma each year in the UK. Adults can also get this type of tumour, but it is rare.

Tests

The first tests your child might have are:

• a CT scan

• an MRI scan

They might also have a ​lumbar puncture​ . This 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, 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

Treatment

The main treatments for medulloblastoma are:

• surgery

• radiotherapy

• chemotherapy

Each child has their own treatment plan. Surgery is usually the first treatment your child will have. Rarely some children have chemotherapy first to shrink the tumour before surgery.

Your child’s specialist team decides on the best treatment for your child. Both you and your child will be involved in decisions about treatment and care.

Surgery

Surgery is usually the first treatment your child will have. 

Your child has surgery to remove as much of the tumour as possible. At the same time, your child’s surgeon takes a piece of the tumour to look at under the microscope. This is to find out what type of medulloblastoma it is.

Hearing your child needs brain surgery can feel very frightening. A paediatric neurosurgeon does the operation. They’re highly skilled professionals in looking after children with brain tumours. 

Fluid build up

Some tumours cause a fluid build up in the brain. This is called hydrocephalus. This can cause symptoms. Some of the symptoms might include:

• headaches

• feeling or being sick

• seizures (fits)

• problems with their eyes or vision

• problems with their strength, balance or coordination

• changes in their behaviour

Treatment to reduce this is an operation. Your child’s surgeon can do this at the same time as removing their tumour. 

They might either:

• make a hole to drain fluid into another area of the brain (ventriculostomy)

• put a tube in their head so that the fluid drains from the brain to another part of the body (a shunt). This is usually into the tummy (abdomen) where the body gets rid of it

Posterior fossa syndrome

Posterior fossa syndrome is a group of symptoms that happens after surgery to the back of the brain. Around 25 to 30 out of 100 children (around 25 to 30%) get posterior fossa syndrome. Symptoms can include:

• difficulty talking, such as not speaking or their speech might be slurred or slow

• difficulty swallowing

• trouble with their muscle tone and being able to move. Symptoms might include your child finding it difficult to walk, or unable to sit up

• being unable to control their movements, so they may make sudden movements. This can look like they are twitching or jerking, or you might notice their eyes moving from side to side

• poor balance

• weakness on one side of the body

• changes in their mood and behaviour, which doesn’t fit the situation or is out of character for them

The symptoms can be very mild or severe. There is no way to know how or if your child will be affected. The symptoms usually develop from one day to a week after surgery.

Posterior fossa symptoms usually improve slowly over a few weeks or months. But they may not go away completely in some children. Research is trying to find out what causes posterior fossa syndrome.

Side effects of treatment for medulloblastoma

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

To help them with any long term side effects, a team of specialists will closely check your child after treatment finishes.

The possible side effects of treatment could lead to problems at school or with your child meeting their developmental milestones.

We have information on follow up and late effects of children’s brain tumour treatment, what treatments can help, and where to get support. The brain tumour late effects service will provide long term support for your child.

Find out about follow up and late effects

Clinical trials

Researchers are interested in finding new and kinder ways to treat medulloblastoma. And ways to reduce the side effects of treatment. Many children have their treatment for a brain tumour as part of a clinical trial.

Read more about clinical trials looking into children’s brain tumours here

Coping

We have information about where to get help and support to help you and your child cope.

Find out about coping with cancer