What is a medulloblastoma?

A medulloblastoma is a type of cancerous (malignant) brain tumour. It normally starts in a part of the brain called the cerebellum. The cerebellum is the part of the brain at the lower back of the head and is important for balance, movement and co-ordination.

Medulloblastomas 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 a medulloblastoma to spread to other parts of the body outside the brain and spinal cord.

This type of brain tumour is not common in adults. It usually affects people under the age of 45. Medulloblastoma is one of the most common brain tumours in children. The information on this page is about medulloblastoma in adults.

Cancer Research UK and the Brain Tumour Charity have more information about medulloblastoma in children.

Related pages

Booklets and resources

Causes of a medulloblastoma

Symptoms may happen if a tumour presses on or grows into nearby areas of the brain. Some symptoms can also happen because the tumour causes a build-up of pressure inside the skull. This may be because of its size, or because the tumour blocks off the normal fluid pathways. This is called raised intracranial pressure. It can cause a build-up of fluid on the brain called hydrocephalus.

Common symptoms include:

  • headaches, often in the morning 
  • being unsteady or having difficulty walking
  • feeling or being sick
  • blurred vision or double vision.

Other possible symptoms include:

  • dizziness
  • changes in personality and behaviour.

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

Related pages

Causes of a medulloblastoma

The causes of medulloblastomas are unknown, but research is being done to find out more.

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

Diagnosis of a 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.

Your doctor may:

  • do a physical examination of parts of your nervous system, such as, examine how your eyes move, and your balance and co-ordination
  • check your reflexes and the power and feeling in your arms and legs
  • ask you some questions to check your reasoning and memory
  • arrange for you to have blood tests to check your general health.

You will have an MRI scan of your brain and spine to find out the exact position and size of the tumour, and whether it has spread into the spine.

You may also have the following tests:

  • A lumbar puncture

    A lumbar puncture is done to collect a small sample of cerebrospinal fluid (CSF) to test. This is to check for cancer cells in the fluid that surrounds the brain and the spine. It is usually taken at least 14 days after surgery. Sometimes the sample can be taken during surgery to remove the tumour.

  • A biopsy

    A biopsy is done to take a small sample of the tumour to be tested to confirm the diagnosis and find out more about the type of medulloblastoma. Brain tumour biopsies are usually done at the same time as surgery to remove the tumour. They can sometimes be done as a separate procedure if a diagnosis is not clear.

Tests called molecular marker tests are also done on the biopsy samples removed from the tumour during surgery. The results of these tests give more information about the type of medulloblastoma.

Molecular markers in medulloblastomas

Molecular marker tests are also called biomarker tests. The tumour may be tested for changes in the genes in the tumour cells. Genes are inside every cell. They are the instructions the cell needs to work properly.

Sometimes the structure inside a gene is permanently changed and no longer gives the correct instructions. This change is called a gene mutation. Molecular markers tests also look for certain tumour markers or proteins in the tumour.

  •  a TP53 mutation
  • signalling pathway mutations called sonic hedgehog (SHH) and wingless (WNT).

This helps to give doctors information:

  • to help confirm a diagnosis
  • about the type of medulloblastoma
  • about how the tumour may behave or develop.

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

We have more about how brain tumours are diagnosed.

Types of medulloblastomas

There are 4 main types of medulloblastomas. These categories refer to how they look under the microscope:

  • classic medulloblastoma
  • desmoplastic or nodular medulloblastoma
  • medulloblastoma with extensive nodularity (MBEN)
  • large cell or anaplastic medulloblastoma.

Information about molecular markers is used to divide medulloblastomas into subgroups. These describe how they behave, not how they look. These subgroups are called:

  • WNT (wingless) activated medulloblastoma
  • SHH (sonic hedgehog) activated medulloblastoma - including TP53 mutant and TP53 wildtype subtypes
  • Group 3 - non-WNT/non-SHH type
  • Group 4 - non-WNT/non-SHH type.

The term ‘wildtype’ is used to describe a gene when it is not mutated.

Treatment for a 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.

Treatment for symptoms of medulloblastoma

You may need treatment for symptoms caused by increased pressure inside the skull (hydrocephalus) before you have any treatment for the tumour. Treatments can improve symptoms and help you feel better. When your symptoms are better controlled it can mean it is possible to have other treatments.

You will probably have:

  • drugs called steroids to reduce swelling around the tumour
  • anti-sickness medication to help sickness (nausea) or dizziness that can be caused by the tumour or treatment. 

Some people may also have an operation to reduce the pressure inside the skull.

Surgery to relieve the pressure inside the skull

You may have an operation which puts a thin tube into the brain to drain the cerebrospinal fluid to another area of the body, usually the abdomen (tummy). This called a shunt (ventriculo-peritoneal shunt). A valve is usually connected to the tube to prevent too much fluid draining from the brain.

During this operation, the cerebrospinal fluid drained is also collected and tested for any tumour markers.

Surgery

The aim of surgery is to remove as much of the tumour as is safely possible. Surgery will also relieve any raised intracranial pressure. Your surgeon will explain your operation and what to expect.

After your surgery you will usually 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, if it is safe to do so.

After surgery, you will usually have radiotherapy.

We have more information about what to expect before and after surgery.

Radiotherapy

Radiotherapy uses high-energy rays to destroy the tumour cells and control the tumour. It is usually given as an outpatient. You will usually need to have radiotherapy to the whole brain and to the spinal cord (cranio-spinal radiotherapy) for around 4 weeks. This is because medulloblastomas can spread to these areas through the cerebrospinal fluid (CSF). 

You will then usually have a further dose of radiotherapy (a boost) for 2 weeks to:

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

Radiotherapy is given as a small dose (fraction) 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.

Proton beam therapy (PBT)

Proton beam therapy (PBT) is another type of radiotherapy which may be used to treat medulloblastoma. PBT uses proton radiation, instead of x-rays, to destroy cancer cells. Proton beams stop when they reach the area being treated. This is different to standard radiotherapy beams, which pass through the area and some healthy tissue around it. This means that PBT may have fewer late side effects. The dose of radiotherapy used is the same as other types of standard radiotherapy.

Proton beam therapy is given using specialised equipment. If your cancer doctor thinks it is a suitable treatment for you, they will refer you to a hospital that has a PBT centre and specialises in this treatment.

Your doctor and specialist team will explain your radiotherapy treatment in detail.

We have more information on proton beam therapy.

Chemotherapy

Chemotherapy uses anti-cancer drugs to destroy tumour cells. Chemotherapy drugs that might be used for medulloblastoma include:

Treatment is usually given over a number of months.

Your doctor will explain the benefits of chemotherapy in your situation and possible side effects.

We have more information about possible side effects of chemotherapy.

Side effects of treatment for a 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.

Side effects of chemotherapy for brain tumours can include:

Common early side effects of radiotherapy for medulloblastoma include:

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.

Late effects of radiotherapy can include:

  • Changes in hormone levels

    Radiotherapy can make the pituitary gland underactive. The pituitary gland is at the bottom of the brain and makes hormones. An underactive pituitary gland can cause different symptoms, including:

    • changes in your periods
    • changes to your sex drive
    • severe tiredness.

    You may be referred to a doctor specialising in hormone treatments (an endocrinologist). You may need to have hormone treatments to replace any hormones your pituitary gland is not making enough of.

  • Effects on fertility

    Treatment for medulloblastoma is likely to affect whether you can get pregnant or make someone pregnant (your fertility). If you are worried about this, it is important to talk with your doctor before you start treatment.

  • Changes to your memory, thinking and reasoning (cognitive changes)

    We have more information about how to manage cognitive changes.

  • Hearing problems

    You may notice reduction in your hearing. If you have any hearing loss, let your treatment team know. You can be referred to a specialist ear nose and throat (ENT) team to have your hearing checked.

  • Eyesight problems

    Radiotherapy for medulloblastoma can cause the clear lens of the eye to become cloudy and blurred, which can affect vision. This is called cataracts. It can usually be easily treated with a small operation.

  • Second cancer

    Some people may develop a second cancer in the treated area years later. Your specialist doctor, nurse or radiographer can explain more about this.

Clinical trials

Clinical trials are a type of medical research involving people. They are important because they show which treatments are most effective and safe. This helps healthcare teams plan the best treatment for the people they care for.

Trials may test how effective a new treatment is compared to the current treatment used. Or they may get information about the safety and side effects of treatments.

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.

Clinical trials also research other areas. These include diagnosis and managing side effects or symptoms. As 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.

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. Appointments are usually more frequent to begin with.

You may have some side effects from treatment. These may include tiredness or problems thinking.

You may need to have regular tests of your:

  • hearing
  • pituitary hormone (through a blood test)
  • eyesight.

Your doctor or nurse may refer you to a neurological rehabilitation (neuro-rehab) service. This service may be able to refer you to a physiotherapist, speech and language therapist or occupational therapist and offer emotional support.

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.

If you have any symptoms or side effects you are worried about, you can also contact your doctor or nurse between appointments.

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 diagnosis affects your right to drive

Following diagnosis and treatment for a brain tumour, most people will not be allowed to drive for a period of time. If you drive, it is important to discuss with your doctor how your diagnosis and treatment for a brain tumour affects your right to drive.

If you have a driving licence, you must tell the licencing agency (DVLA or DVA) that you have been diagnosed with a brain tumour. We have more information about how a brain tumour may affect your right to drive.

Getting support

Being diagnosed with a brain tumour may cause a range of different emotions. There is no right or wrong way to feel. It may help to get support from family, friends or a support organisation.

Macmillan is also here to support you. If you would like to talk, you can:

Other organisations who can help

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

About our information

This information has been written, revised and edited by Macmillan Cancer Support’s Cancer Information Development team. It has been reviewed by expert medical and health professionals and people living with cancer.

  • References

    Below is a sample of the sources used in our information about medulloblastomas. If you would like more information about the sources we use, please contact us at informationproductionteam@macmillan.org.uk

     

    European Association of Neuro-Oncology and European Society for Medical Oncology (EANO-ESMO) Clinical Practice Guidelines for prophylaxis, diagnosis, treatment and follow-up: Neurological and vascular complications of primary and secondary brain tumours. 2021. Available from: Available from www.annalsofoncology.org/article/S0923-7534(20)43146-1/fulltext [accessed June 2024].

     

    European Association of Neuro-Oncology and EANO–EURACAN Clinical practice guideline for diagnosis, treatment, and follow-up of post-pubertal and adult patients with medulloblastoma. Enrico Franceschi et al. Published: December, 2019. Available from: www.thelancet.com/journals/lanonc/article/PIIS1470-2045(19)30669-2/fulltext [accessed June 2024].

     

    European Society for Medical Oncology (ESMO). How we treat medulloblastoma in adults. E. Franceschi et al. Published: June 2021. Available from: www.esmoopen.com/article/S2059-7029(21)00133-2/fulltext [accessed June 2024].

     

    NICE Guideline NG99. Brain tumours (primary) and brain metastases in over 16s. 2018 (updated 2021). Available from: www.nice.org.uk/guidance/ng99 [accessed June 2024].

Professor Catherine McBain, Consultant Clinical Oncologist & Honorary Professor in Cancer Sciences

Professor Catherine McBain

Reviewer

Consultant Clinical Oncologist

Date reviewed

Reviewed: 01 May 2024
|
Next review: 01 May 2027
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Trusted Information Creator - Patient Information Forum

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