Medulloblastoma

Medulloblastoma is a type of cancerous (malignant) brain tumour that can sometimes

affect adults. It starts in or near the cerebellum and can spread to other parts of the brain

or spinal cord.

Symptoms can include:

  • headaches
  • sickness
  • problems with balance and coordination
  • dizziness
  • problems with vision.

You will need to have several tests to diagnose medulloblastoma. You will have a brain and spine MRI (magnetic resonance imaging) scan, or a CT (computerised tomography) scan.

You may also have a biopsy or a lumbar puncture.

Your specialist doctor will talk with you about the best treatment for you and explain the benefits and disadvantages. Treatments may include:

These treatments can cause side effects. Some of these can start months or years after

treatment has finished. Your doctor will explain what to expect and how side effects

can be managed.

What is medulloblastoma?

Medulloblastoma is a type of cancerous (malignant) tumour that starts in or near part of the brain called the cerebellum. It can spread to other parts of the brain or to the spinal cord, usually through the cerebrospinal fluid (CSF). CSF is the fluid that surrounds and protects the brain and the spinal cord. It’s very rare for medulloblastoma to spread to any other parts of the body.

This type of tumour usually affects people under the age of 45.

This information is about medulloblastoma in adults. If you need information about medulloblastoma in children, you can contact the Children’s Cancer and Leukaemia Group.

This information should ideally be read with our general information about brain tumours, which explains more about the tests, treatments and side effects you may have.


Causes of medulloblastoma

The cause of medulloblastoma is unknown but research is going on to find out more.


Symptoms of medulloblastoma

The symptoms of medulloblastoma will depend on the size and position of the tumour

and whether it is causing pressure on the brain. Common symptoms are:

Other possible symptoms include:

  • dizziness
  • problems with your eyes and vision
  • changes in your personality and behaviour.


Tests for medulloblastoma

Your doctor will need to find out as much as possible about the type, position and size of the tumour, so they can plan the best treatment for you. You will have a number of different tests.

During your examination, your doctor will:

  • check your nervous system – this includes checking your reflexes and the power and feeling in your arms and legs
  • shine a light at the back of your eyes to check if the optic nerve is swollen – this can be a sign of raised pressure on the brain
  • ask you some questions to check your reasoning and memory.

You will also have blood tests to check your general health and to see how well your kidneys and liver are working.

You will have MRI scans of your brain and spine, and sometimes a CT scan, to find out the exact position and size of the tumour and whether it has spread. You may also have a biopsy or a lumbar puncture.

MRI scan

This scan uses magnetism to build up a detailed picture of areas of your body. You may be given an injection of dye, into a vein, to improve the images from the scan. We have more detailed information about having an MRI scan.

CT scan

A CT (computerised tomography) scan uses x-rays to build a three-dimensional picture of the inside of the body. You may be given either a drink or injection of dye. This is to make certain areas of the body show up more clearly. We have more detailed information about having a CT scan.

Biopsy

Sometimes, a sample of cells from the tumour (biopsy) is taken and looked at under a microscope before you have any treatment. This test involves an operation. Your doctor will explain if you need a biopsy and exactly what the operation involves. Sometimes the biopsy and surgery to remove the tumour are done at the same time.

If you have a biopsy, this can be done under a general or local anaesthetic. The neuro (brain) surgeon makes a small hole in the skull and passes a fine needle through into the tumour. They remove a small sample of tissue, which is looked at to find out the type and grade of cells in the tumour.

Lumbar puncture

You will have a lumbar puncture to see if there are any tumour cells in the cerebrospinal fluid (CSF). It is usually done after surgery to remove the tumour.

Your doctor uses a local anaesthetic to numb the lower part of your back and then passes a needle gently into the spine. They then take a small sample of CSF to check for tumour cells. A lumbar puncture is usually done as an outpatient and it only takes a few minutes.


Treatment for medulloblastoma

The main treatments for medulloblastoma are surgery and radiotherapy. Some people may also have chemotherapy. Your specialist doctor or nurse will explain:

  • the aims of your treatment and what it involves
  • the benefits and disadvantages of treatment
  • the risks and side effects.

You will have time to talk and ask questions about all of this information with your doctor or nurse before you make any treatment decisions. You may have a choice of treatment options. Let your specialist know if you need more information or time.

Surgery

The aim of surgery is to remove as much of the tumour as possible, without damaging the surrounding brain tissue. It is not usually possible to remove the tumour completely, because

it may be affecting areas of the brain that cannot be operated on safely. You will usually have radiotherapy after surgery to treat any remaining tumour cells. Some people may also have chemotherapy.

Your surgeon will explain what your operation will involve. They will also talk to you about the possible complications and risks.

It can take a while to recover after surgery, so it’s important to take good care of yourself. Get plenty of rest, try to eat well and follow the advice given by your surgeon or specialist nurse.

Some people may need extra support to help them with their recovery. This may be from a physiotherapist, who can help you to improve your balance, walking or strength. You may also get help from an occupational therapist, who can provide equipment and help you become more independent.

Radiotherapy

Radiotherapy treatment uses high-energy rays to destroy cancer cells. It is used after surgery to treat any remaining tumour cells. Even if the entire tumour is removed with surgery, you will still need to have radiotherapy to reduce the risk of it coming back.

You have radiotherapy to the whole brain and to the spinal cord. This is because medulloblastoma can spread to these areas through the CSF. You will usually have an extra dose of radiotherapy to the area of the brain where the medulloblastoma started. You usually have this treatmentin daily sessions, from Monday to Friday, over several weeks.

Radiotherapy makes you feel very tired and this can carry on for weeks or longer after it finishes. Try to get plenty of rest. The skin in the treated areas may become itchy and red or darker. You will also lose your hair in the treated areas, but this usually grows back 2–3 months after treatment. Some patches of hair low down at the back of your head may not grow back. We have more information about coping with hair loss.

Your specialist doctor or nurse will talk to you about the side effects of radiotherapy and how to manage them. They will also explain the risk of late side effects. These are side effects that sometimes start months or years after radiotherapy.

Chemotherapy

Chemotherapy is the use of anti-cancer (cytotoxic) drugs to destroy cancer cells. Your cancer doctor may talk to you about having chemotherapy to reduce the risk of medulloblastoma

coming back or if it has spread.

Side effects can include:

Your cancer doctor or nurse will talk to you about any side effects you may have and how to manage them. They will also discuss any possible long-term side effects.

Steroids

Steroids are drugs that are used to reduce swelling of the brain caused by the tumour or by radiotherapy. You may be given steroids before or after surgery or during radiotherapy.

They can improve your symptoms and help you feel better.

Some of the side effects of steroids can include:

  • indigestion – taking steroids with food can help with this
  • weight gain
  • feeling restless or agitated
  • problems with sleeping.

Let your doctor or nurse know if these are causing problems or you notice any other side effects.

It’s important to take the steroids exactly as your doctor has explained.


Driving

You may not be allowed to drive for a period of time. Although this can be upsetting, it’s important to follow the advice you are given.

You will need to contact the Drivers and Vehicle Licensing Association (DVLA) if you live in England, Scotland or Wales. If you live in Northern Ireland you will need to contact the Driver and Vehicle Agency (DVA). They will advise you of any restrictions on your right to drive:

If you’re not sure what you should do, check with your cancer doctor or specialist nurse. They will explain things to you.


Follow-up

After your treatment has finished, you’ll have regular check-ups, tests and scans. Treatment for medulloblastoma can sometimes cause side effects that start months or years after treatment has finished. These appointments are a good opportunity to talk to your doctor about any worries or problems you have.

Many people find they get very anxious before appointments. This is natural. It can help to get support from family, friends, your specialist nurse or one of the organisations listed below.

Brainstrust

Brainstrust is dedicated to helping people affected by a brain tumour. They work to improve clinical care for brain tumour sufferers and provide support in their search for treatment. They provide support and advice from the point of diagnosis and beyond.

The Brain Tumour Charity

The Brain Tumour Charity offers a wide range of inclusive and accessible services for everyone affected by a brain tumour.