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This information is about a specific type of brain tumour called a CNS lymphoma. It should ideally be read with our general information about brain tumours.
The central nervous system (CNS) is made up of the brain and spinal cord. A lymphoma is a cancerous tumour of the lymph cells, that are part of the body's immune system and help to fight infection.
Some lymphomas in the head will have spread from lymphomas in other parts of the body. Lymphomas may also start in the brain and are called primary CNS lymphomas. Most of those affecting the brain are high-grade non-Hodgkin's lymphomas.
The most common site for a CNS lymphoma is the cerebrum (the white area on the diagram below), but it can also spread to other parts of the brain.
It is common for more than one tumour to be present.
Usually the cause is not known, and research is being carried out to look into possible causes. Rarely, CNS lymphoma may affect people whose immune system is not working properly – for example, after organ transplants, or in people with HIV. However, most people who develop this type of cancer have a normal immune system.
The main symptoms arise from increased pressure within the skull (known as raised intracranial pressure). This may be caused by a blockage in the ventricles of the brain (fluid-filled spaces in the brain) that leads to a build-up of cerebral spinal fluid (CSF). CSF is the fluid that surrounds and protects the brain and spinal cord. The increased pressure may also be caused by swelling around the tumour itself.
Raised intracranial pressure can cause headaches, sickness (vomiting) and changes in eyesight. Other symptoms depend on which part of the brain is affected.
Fits (seizures) may also occur with this type of tumour and the person may appear to be confused at times. Changes in behaviour and personality may also be seen.
A tumour in the cerebrum may cause a weakness on one side of the body (hemiparesis). If the area known as the cerebellum is affected, there may be signs of loss of coordination and balance. People with a tumour in this part of the brain may appear to walk awkwardly, or stumble, and can have trouble keeping their balance.
So that your doctors can plan your treatment, they need to find out as much as possible about the type, position and size of the tumour. This is done by having a number of tests and investigations.
Neurological examination (nerve tests) You will usually have a neurological examination to assess any effect of the tumour on your nervous system. A CT scan or MRI scan will be done to give the precise position of the tumour.
CT (computerised tomography) scan A CT scan takes a series of x-rays which build up a three-dimensional picture of the inside of the body. The scan is painless and takes from 10–30 minutes. CT scans use a small amount of radiation, which will be very unlikely to harm you and will not harm anyone you come into contact with. You will be asked not to eat or drink for at least four hours before the scan.
Most people who have a CT scan are given a drink or injection to allow particular areas to be seen more clearly. This may make you feel hot all over. Before having the injection or drink, it is important to tell the person doing this test if you are allergic to iodine or have asthma.
MRI (magnetic resonance imaging) scan This test is similar to a CT scan, but uses magnetism instead of x-rays to build up a detailed picture of areas of your body. During the scan you will be asked to lie very still on a couch inside a long tube for about 30 minutes. It is painless, but can be uncomfortable, and some people feel a bit claustrophobic during the scan. It is also noisy, but you will be given earplugs or headphones.
Some people are given an injection of dye into a vein in the arm, but this usually does not cause any discomfort.
Lumbar puncture Sometimes it is necessary to carry out a test known as a lumbar puncture|. The skin on your back is numbed with local anaesthetic, and a needle is passed through the skin and into your spinal area so that a small amount of spinal fluid (CSF) can be withdrawn for tests. The CSF can then be examined to see if there are any tumour cells present.
Eye examination An eye examination using an ophthalmoscope (instrument which shines a light at the back of the eye) may be done to see if the optic disc at the back of your eye is swollen. A swollen optic disc is known as papilloedema and is a sign of raised intracranial pressure. Your all-round vision will also be tested.
Biopsy To give an exact diagnosis, a sample of cells from the tumour is sometimes taken, then looked at under a microscope. The biopsy involves an operation. Your doctor will discuss with you whether this is necessary in your case, and exactly what the operation involves.
The treatment for a CNS lymphoma depends on a number of things including your general health, the size and position of the tumour, and whether or not it has spread. The results of your tests will enable your doctor to decide on the best type of treatment for you.
Your treatment will usually be planned by a team of specialists known as a multidisciplinary team (MDT). The team will usually include a doctor who specialises in treating cancer (an oncologist), a doctor who specialises in treating illnesses of the brain (neurologist), a specialist nurse and possibly other health professionals, such as a physiotherapist or a dietitian.
If the pressure in the skull is raised, it is important to reduce it before any treatment is given for brain tumours. Steroid drugs| are used to reduce swelling around the tumour, and may shrink the tumour itself. Steroids can also be an important part of the treatment.
Before you have any treatment, your doctor will give you full information about what the treatment involves and explain the aims of the treatment to you. They will usually ask you to sign a form saying that you give your permission (consent) for the hospital staff to give you the treatment. No medical treatment can be given without your consent.
Treatment can be given for different reasons and the potential benefits will vary for each person. If you have been offered treatment that aims to cure your cancer, deciding whether to have the treatment may not be difficult. However, if a cure is not possible and the treatment is to control the cancer for a period of time, it may be more difficult to decide whether to go ahead.
If you feel that you can't make a decision about the treatment when it is first explained to you, you can always ask for more time to decide.
You are free to choose not to have the treatment and the staff can explain what may happen if you do not have it. You don't have to give a reason for not wanting to have treatment, but it can be helpful to let the staff know your concerns so that they can give you the best advice.
Chemotherapy| is the use of anti-cancer (cytotoxic) drugs, which destroy cancer cells. Chemotherapy is often used as part of the treatment for CNS lymphoma. It is usually given into a vein (intravenously), but occasionally it may be given into the fluid surrounding the brain by a lumbar puncture|, or through a special flat plastic bubble (ommaya reservoir) which is inserted under the scalp during an operation. A number of research trials are being done to improve this form of treatment.
Radiotherapy| treatment uses high-energy rays to destroy the cancer cells. It is often used to treat this type of tumour as it can be an effective treatment. It may be used alone, or together with chemotherapy.
Biological therapies aim to use the body's own immune system to attack cancer cells. There are several different types of biological therapy. One that has become a standard treatment for regular (non-CNS) lymphoma is called rituximab|. This is a type of monoclonal antibody. Monoclonal antibodies are used to try to destroy some types of cancer cells while causing little harm to normal cells. Some doctors are looking into the possibility of using rituximab in CNS lymphoma as part of research trials but at present it does not form part of the standard treatment.
Surgery| is rarely used to treat CNS lymphoma.
You may find the idea of a tumour affecting the brain extremely frightening. The brain controls the body, and not being in control is something that can be very worrying. You may experience many different emotions|, including anxiety and fear. These are all normal reactions, and are part of the process many people go through in trying to come to terms with their condition.
Many people find it helpful to talk things over with their doctor or nurse, or with one of our support service nurses. Close friends and family members can also offer support.
The Drivers and Vehicle Licensing Association (DVLA)| will not allow you to drive for a minimum of 2 years following a diagnosis of primary CNS lymphoma.
After surgery to the main part of the brain, the cerebrum, there is a small risk that you will have epileptic fits and the DVLA requires that you need to be 'fit-free' for a year until you can drive again.
You may not be allowed to drive some vehicles, such as a LGV (large goods vehicle) or a PCV (passenger carrying vehicle).
The hospital will not contact the DVLA, but it is your responsibility to do so and your doctor will advise you how to do this.
This section has been compiled using information from a number of reliable sources, including:
For further references, please see the general bibliography|.
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