A medulloblastoma is a type of brain tumour which is rare in adults, but more common in children. 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 be read with our general information about brain tumours. We hope it answers your questions. If you have any further questions, you can ask your doctor or nurse at the hospital where you are having treatment.
The brain and spinal cord
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The brain and spinal cord make up the central nervous system (CNS). The brain controls different functions of the body, how we think, feel, learn and move. The spinal cord is made up of nerves that run down the middle of the back (spine). Messages between the brain and other parts of the body travel through the spinal cord.
Medulloblastoma is a type of primitive neuroectodermal tumour (PNET). These tumours develop from poorly developed cells at a very early stage of their life.
Medulloblastoma usually happens in people under 45. They start in the cerebellum (see diagram). They may sometimes 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 medulloblastomas to spread to any other parts of the body.
Causes of a medulloblastoma
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The cause of medulloblastoma is unknown but research is going on to find out more.
Brain tumour symptoms will depend on the size and the position of the tumour. Common symptoms are headaches, problems with balance and coordination affecting walking and feeling/being sick. Other possible symptoms are dizziness, eye problems, changes in personality and behaviour.
Sometimes the first symptoms are due to increased pressure in the brain (called raised intracranial pressure). This can be because of swelling around the tumour, or a build-up of cerebrospinal fluid (CSF) that surrounds and protects the brain and spinal cord. Raised intracranial pressure can cause headaches, sickness (vomiting) and sight problems. Vomiting is common first thing in the morning.
Your doctors 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.
The doctor will examine you and do checks on your nervous system. This includes checking your reflexes and the power and feeling in your arms and legs. They also shine a light at the back of your eyes to check if the optic nerve is swollen, which can be a sign of raised pressure in the brain. Your doctor will ask some questions to check your reasoning and memory. You will also have blood tests taken to check your general health and to see how well your kidneys and liver are working.
You will have MRI or a CT scan to find out the exact position and size of the tumour.
MRI (magnetic resonance imaging) scan
An MRI scan uses magnetism to build up a detailed picture of the brain and spinal cord.
Before the scan you may be asked to complete and sign a checklist. This is to make sure it’s safe for you to have an MRI scan. Before having the scan, you’ll be asked to remove any metal belongings, including jewellery. Some people are given an injection of a dye into a vein in the arm.
This is called a contrast medium and can help the images from the scan show up more clearly. During the test, you will be asked to lie very still on a couch inside a long cylinder (tube) for about 30 minutes. It is painless but can be slightly uncomfortable, and some people feel a bit claustrophobic during the scan. It’s also noisy, but you’ll be given earplugs or headphones.
CT (computerised tomography) scan
A CT scan takes a series of x-rays that build up a three-dimensional picture of the inside of the body. The scan is painless and usually only takes 10-30 minutes. CT scans use small amounts of radiation, which will be very unlikely to harm you or anyone you come into contact with.
You may be given an injection of a dye, which allows particular areas to be seen more clearly. This may make you feel hot all over for a few minutes. If you’re allergic to iodine or have asthma, you could have a more serious reaction to the injection, so it is important to let your doctor know beforehand.
Hear from a superintendent radiographer in CT, and Jyoti, a CT scan patient, about what to expect when having a CT scan.
A sample of cells from the tumour (biopsy) is usually taken and examined under a microscope. The biopsy involves an operation. The doctor will discuss with you whether this is needed and exactly what the operation involves.
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.
The main treatments for a medulloblastoma are surgery and radiotherapy. Some people may also have chemotherapy. Your specialist doctor and nurse will explain the aims of your treatment and what it involves. They will talk to you about treatment benefits and disadvantages. They will also explain the risks and side effects.
Deciding on the treatments that are right for you is a decision you make in partnership with your doctor. Make sure you have enough information and time to help you make treatment decisions.
The aim of having surgery for brain tumours 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 can spread through the CSF. You will usually have radiotherapy after surgery to get rid of any remaining tumour cells. Some people also have chemotherapy.
Your surgeon will explain what your operation will involve. They will 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 and specialist nurse.
Some people may need extra support to help with their recovery. This may be from a physiotherapist who can help you to improve your balance, walking or strength. Occupational therapists can provide equipment and help you become more independent.
Radiotherapy treatment uses high energy rays to destroy the cancer cells. It is used after surgery to destroy any remaining tumour cells. You have radiotherapy to the brain and the spinal cord. This is because medulloblastoma can spread to the spinal cord. You may have a booster dose to the area of the brain where the medulloblastoma started.
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 area may become itchy and red or darker and you will lose the hair in the area. This usually grows back after 2- 3 months. Your nurse will give you advice on looking after the skin and coping with hair loss. Your cancer doctor and specialist nurse will talk to you about the immediate and possible long term side effects of radiotherapy. Newer ways of giving radiotherapy aim to give a higher dose of radiotherapy to the tumour without damaging the surrounding area.
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 include being more at risk of infection, tiredness, hair loss, feeling sick and a sore mouth. Your cancer doctor or nurse will talk to you about the immediate side effects and ways of managing them. They will also discuss any possible long term side effects.
Steroids are drugs that are used to reduce swelling around the tumour. You may be given steroids before or after surgery and radiotherapy. They improve your symptoms and help you feel better.
Some of the side effects include: indigestion, weight gain, restlessness, agitation and sleep disturbance. Let your doctor or nurse know if these are causing problems or you notice any other effects. Taking steroids with food can help reduce indigestion.
It’s very important to take them exactly as your doctor has prescribed them.
Being diagnosed with a brain tumour may feel very frightening at times. You may have many different feelings, including anxiety, anger, fear, feeling low or depressed. Many people go through these in coping with their illness.
It’s important to get the support you need. You may find it helpful to talk things over with family and close friends and with your doctor or nurse. You can also talk to one of our support service nurses. Sometimes people need more help to cope with difficult feelings of anxiety or depression. Your doctor can refer you to a counsellor or psychologist for more support.
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. Your doctor will ask you to contact the Drivers and Vehicle Licensing Association (DVLA). It is your responsibility to contact the DVLA. Your doctor or nurse will explain what you need to do.
You can contact the DVLA by phone on 0300 790 6806 or at dvla.gov.uk
This information has been compiled using information from a number of reliable sources, including:
Guidelines on the diagnosis and management of Adult PNETs. British Neuro-Oncology Society/National Cancer Action Team, Rare Tumour Guidelines (June 2011)
Packer and Schiff . Neuro-oncology. 1st edition. 2012. Wiley-Blackwell.
National Institute for Health and Clinical Excellence (NICE). Improving Outcomes for People with Brain and Other CNS Tumours – The Manual. 2006.
With thanks to Professor Michael Williams, Consultant Clinical Oncologist, who reviewed this edition.
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