What is a medulloblastoma?

Medulloblastomas are a type of brain tumour.

A medulloblastoma is a type of cancerous (malignant) tumour. It 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 is very rare for medulloblastoma to spread to other parts of the body.

This type of brain tumour is rare in adults. But it is one of the most common brain tumours in in children. This information is about medulloblastoma in adults.

For more information about medulloblastoma in children, you can contact the Children’s Cancer and Leukaemia Group.

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Symptoms of medulloblastoma

As a tumour grows, it can press on or grow into nearby areas of the brain. This can cause symptoms because it stops that part of the brain from working normally. Some symptoms can also happen because the tumour causes a build-up of pressure inside the skull. This is called raised intracranial pressure.

Symptoms can depend on the size and position of the tumour and how slowly or quickly it grows. They may develop suddenly or slowly over months.

Common symptoms include:

  • headaches
  • problems with balance and movement
  • difficulty walking
  • feeling or being sick
  • blurred vision.

Other possible symptoms include:

  • dizziness
  • changes in your personality and behaviour.

We have more information about possible symptoms of a brain tumour.

Causes of medulloblastoma

The cause of medulloblastoma is unknown, but research is being done to find out more.

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

We have more information about risk factors and causes of brain tumours.

Diagnosis of medulloblastoma

Your doctors need to find out as much as possible about the type, position and size of the tumour, so they can plan your treatment.

You will have a brain and spine MRI scan to find out the exact position and size of the tumour.

You may also have:

  • a lumbar puncture, to collect a small sample of cerebrospinal fluid (CSF) to test
  • a biopsy to take a small sample of the tumour to test – brain tumour biopsies are usually done at the same time as surgery to remove the tumour.

Your doctor may also:

  • check your reflexes and the power and feeling in your arms and legs
  • shine a light at the back of your eye to check if there is swelling
  • ask you some questions to check your reasoning and memory
  • arrange for you to have blood tests to check your general health and to see how well your kidneys and liver are working

Biomarker tests and medulloblastoma

Biomarker (or molecular marker) tests are extra tests that are done on samples removed from the tumour during surgery. The samples are tested for signs of gene changes.

This may give the doctors information about:

  • which treatment is most likely to be effective for you
  • how the tumour may develop.

You may have to wait some time for the results of these tests. Your doctor can tell you if biomarker tests are helpful in your situation.

We have more about how brain tumours are diagnosed.

Getting support

Being diagnosed with a brain tumour can make you feel shocked, frightened, angry or upset. There is no right or wrong way to feel. Talking about your feelings can often help.

You may also want to get support from a brain tumour charity, such as:

How diagnosis affects your right to drive

Most people diagnosed with a brain tumour will not be allowed to drive for a time after their diagnosis. Your doctor, surgeon or specialist nurse will tell you if this applies to you. 

If you have a driving licence, you must tell the licensing agency you have been diagnosed with a brain tumour.

You could be fined if you do not tell them. You could also be prosecuted if you have an accident.

Treatment for medulloblastoma

The main treatments for medulloblastoma are surgery and radiotherapy. You may also have chemotherapy. Your treatment depends on:

  • the size and position of the tumour the symptoms you have
  • your age
  • sometimes, the biomarker results.

A team of specialists will plan your treatment. Your specialist doctor and nurse will explain the aims of your treatment and what it involves. They will talk to you about the benefits and disadvantages of different treatment types. They will also explain the risks and side effects.

You may be given a choice of treatment options. You will have time to talk about this with your hospital team before you make any treatment decisions.

You will need to give permission (consent) for the hospital staff to give you the treatment. Ask any questions about anything you do not understand or feel worried about. Tell your specialist if you need more information or more time to decide on a treatment.

Surgery

You may have surgery to remove as much of the tumour as possible. Your surgeon will explain your operation and what to expect. After surgery, you will have radiotherapy.

After your surgery you will also have a scan to see if any of the tumour has been left behind. If there is any tumour remaining, you may be offered further surgery to try to remove this.

Radiotherapy

Radiotherapy uses high-energy rays to destroy the tumour cells. Radiotherapy is given as a small dose (fraction) once every day, from Monday to Friday for several weeks. Your cancer doctor (oncologist) will tell you how long your treatment will last and the type of radiotherapy you will have.

You will need to have radiotherapy to the whole brain and to the spinal cord (cranio-spinal radiotherapy). This is because medulloblastomas can spread to these areas through the cerebral spinal fluid (CSF). You will usually have extra doses of radiotherapy (a boost) to:

  • the area of the brain where the medulloblastoma started
  • any other areas where tumour was seen on a scan.

Chemotherapy

Chemotherapy uses anti-cancer drugs to destroy tumour cells. You may also have chemotherapy with or, after radiotherapy. Your doctor will explain whether chemotherapy might be helpful in your situation.

Side effects of treatment for medulloblastoma

Your specialist doctor or nurse will explain your treatment and possible side effects. Most side effects are short term and will improve gradually when the treatment is over. Some treatments can cause side effects that do not get better. These are called long-term effects. You may also get side effects that may start months or years later. These are called late effects.

We have more information about coping:

When chemotherapy is given at the same time as radiotherapy, it can cause more side effects than having either of the treatments alone.

Treatment for symptoms of medulloblastoma

You may need treatment for the symptoms of a medulloblastoma before you have any treatment for the tumour. You may also need your symptoms managed during your main treatment or, for a while after it has finished.

You may have:

  • steroids to reduce swelling around the tumour
  • surgery to place a long, thin tube, called a shunt – this lets some of the fluid drain from the brain to another area of the body, to reduce pressure inside the skull
  • anti-sickness medication to help sickness (nausea) or dizziness that can be caused by the tumour or treatment.

Sometimes a brain tumour cannot be removed or controlled anymore. If this happens you can still have treatment for any symptoms. You will have supportive care (sometimes called palliative care) from a specialist doctor or nurse who is an expert at managing symptoms.

We have more information about coping with advanced cancer.

Clinical trials

Clinical trials are medical research trials involving people. Doctors may use clinical trials to test new treatments, find new drugs, or improve the way treatments are given.

Because these tumours are rare, there may not always be a relevant clinical trial happening. If there is, your doctor or nurse may ask you to think about taking part.

They will give you information about the clinical trial so that you understand what it means to take part. If you decide not to take part in a trial, your specialist doctor and nurse will respect your decision. You do not have to give a reason for not taking part. Your decision will not change your care. Your doctor will give you the standard treatment for the type of tumour you have.

We have more information about clinical trials.

After treatment for medulloblastoma

After your treatment has finished, you will have regular check-ups, tests and scans.

Some side effects can start months or years after treatment has finished. You can use your follow-up appointments to talk about these side effects, or about any other worries or problems you have.

Many people find they get very anxious before appointments. This is natural. It may help to get support from family, friends or a specialist nurse.

How we can help

Macmillan Grants

If you have cancer, you may be able to get a Macmillan Grant to help with the extra costs of cancer. Find out who can apply and how to access our grants.

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