BRAIN TUMOURS

( By JASCAP )

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Treating brain tumours

Treatments such as surgery, radiotherapy or chemotherapy may be used alone or in combination to treat brain tumours. The choice of treatment will depend on a number of factors, including the type of brain tumour and its size, the grade of the tumour, its position and your general health.

Mutlidisciplinary team

A team of doctors and other health professionals will plan your care. This is known as a multidisciplinary team (MDT) and may include:

  • a neurosurgeon a doctor who specialises in operating on the brain or nervous system
  • a neurologist a doctor who specialises in treating illnesses of the brain and nervous system
  • a clinical oncologist a doctor who treats cancer with radiotherapy and chemotherapy
  • a specialist nurse who gives information and support to people with brain tumours.

The MDT may also include other health care professionals, including a:

  • dietitians
  • physiotherapists
  • occupational therapists
  • psychologists or counsellors.

Giving your consent

Before you have any treatment, your doctor will explain its aims. 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, and before you are asked to sign the form you should be given full information about:

  • the type and extent of the treatment you are advised to have
  • the advantages and disadvantages of the treatment
  • any other types of treatments that may be appropriate
  • any significant risks or side effects of the treatment.

If you do not understand what you've been told, let the staff know straight away so that they can explain again. Some cancer treatments can be very complex, so it's not unusual for people to need repeated explanations.

It is often a good idea to have a friend or relative with you when the treatment is explained, to help you remember the discussion more fully. You may also find it useful to write down a list of questions before you go to your appointment.

Patients often feel that the hospital staff are too busy to answer their questions, but it's important for you to be aware of how the treatment is likely to affect you. The staff should be willing to make time for you to ask questions.

You can always ask for more time to decide about the treatment if you feel that you can't make a decision when it is first explained to you.

You are also free to choose not to have the treatment. The staff can explain what may happen if you do not have it. It is essential to tell a doctor or the nurse in charge, so that they can record your decision in your medical notes. You do not 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.

Second opinion

Your MDT use national treatment guidelines to decide on the most suitable treatment for you. Even so, you may want another medical opinion. Either your specialist, or your GP, will be willing to refer you to another specialist for a second opinion, if you feel it will help. Getting a second opinion may cause a delay in the start of your treatment, so you and your doctor need to be confident that it will give you useful information.

If you do go for a second opinion, it may be a good idea to take a friend or relative with you, and have a list of questions ready; so that you can make sure your concerns are covered during the discussion.

The benefits and disadvantages of treatment Often, people are concerned about the possible side effects associated with treatment. Many of the treatments for brain tumours can cause side effects.

However, improved ways of reducing or avoiding many of these problems have made most of the treatments much easier to cope with.

Treatment can be given for different reasons and the potential benefits will vary depending upon the individual situation. Surgery can be done with the aim of curing some types of brain tumour. Occasionally additional treatments are also given to reduce the risk of it coming back.

If the tumour is at a more advanced stage or in a part of the brain that's difficult to reach without risk of damage, the treatment may only be able to control it. This can lead to an improvement in symptoms and a better quality of life. However, for some people in this situation the treatment will have little effect on the tumour and they may get the side effects without any of the benefit.

If you've been offered treatment that aims to cure your brain tumour, deciding whether to accept the treatment may not be difficult. However, if a cure is not possible and the treatment is to control the tumour for a period of time, it may be more difficult to decide whether to go ahead with treatment.

Making decisions about treatment in these circumstances is always difficult, and you may need to discuss in detail with your doctor whether you wish to have treatment. If you choose not to, you can still be given supportive (palliative) care, with medicines to control any symptoms.

Treatment overview

With most primary brain tumours, surgery is often the first treatment if the tumour can be removed without causing harm to the surrounding brain tissue. However, certain tumours may not need to be operated on immediately, or at all. Some low-grade gliomas, for example, may be carefully monitored if they are not causing problems, and others may be treated with radiotherapy alone. Rare tumours of the brain, such as germinomas or lymphomas, are sometimes treated without an operation, using radiotherapy and chemotherapy.

Surgery can range from having a biopsy (see Surgery for more information) to find out which type of tumour it is, to a major operation where the tumour is completely removed.

Radiotherapy is often used after surgery. It may be given if a tumour has not been completely removed, or if there is a chance that abnormal cells may be left behind following surgery. Or, in the case of high-grade tumours, radiotherapy may be recommended even if all of the tumour has been surgically removed.

When surgery is not possible, or not necessary, radiotherapy, with or without chemotherapy, is used as the main treatment.

Symptom control treatment

In both primary and secondary brain tumours, treatment for particular symptoms may be necessary. For example, anticonvulsant medicines to prevent seizures (fits) and steroids to reduce any inflammation and swelling around the tumour.

Surgery for brain tumours

Very often a biopsy is used to find out exactly what type of brain tumour you have. The biopsy may also be done as part of an operation to remove the tumour.

On this page

  • Biopsy
  • Craniotomy

Biopsy

A biopsy is the removal of a small piece (sample) of the tumour. The sample is sent to a laboratory where it is examined by a pathologist (a doctor who specialises in how disease affects the body's tissue) who can tell what kind of cells are present.

Having a biopsy may mean a few days in hospital as it usually involves an operation under a general anaesthetic. An MRI brain scan or CT scan is done to find the position of the tumour to the nearest millimetre. During the operation a small hole, called a burr hole, is made in the skull. A fine needle is then passed down through the burr hole to remove a small piece of the tumour to be examined by the pathologist.

Guided biopsy

Sometimes, especially if the tumour is deep within the brain, you may have a specialist type of biopsy called a guided biopsy. This can be done either by stereotactic biopsy or by neuronavigation.

With stereotactic biopsy you will be fitted with a head frame either before or after you have been scanned. This helps the doctors to guide the biopsy needle to exactly the right part of the brain. Once the frame is in place the doctors will drill a small hole in the skull in much the same way as a normal biopsy. The frame will then guide the needle to the right place. A stereotactic biopsy is usually done under a local anaesthetic, but may involve a general anaesthetic.

With neuronaviagtion a frame is not needed. The biopsy is taken with a fine needle (in a similar way to a stereotactic biopsy). The surgeon uses the scan to help guide the needle to the right place. Before the scan you may have markers stuck to parts of your head (called fiduciary markers). These markers show up on the scan and help the surgeon guide the needle to the affected area.

Craniotomy

Once the type of brain tumour is known, a more extensive operation can be done to remove all or part of it. A craniotomy is an operation that involves opening the skull. For this operation, you will be given a general anaesthetic. However, you may be awake for at least part of the operation (with the surgical area numbed) if doctors need to check your brain function during surgery. This is called an awake craniotomy.

Some of your hair may need to be shaved off in the anaesthetic room before the operation (doctors try to shave only as much as is necessary). The surgeon will cut the scalp and the piece of skull over the tumour, remove the tumour itself, and replace the piece of skull. The flap of scalp is then stitched back in place.

If It's not possible, or advisable, to remove the whole tumour, only part of the tumour is removed. This is called partial resection or debulking.

Sometimes the only way for the surgeon to remove the tumour is to go through a healthy part of the brain, which may cause damage. The effects of this will vary depending on the area of the brain involved. Your surgeon will talk this over with you very carefully beforehand to make sure that you're fully aware of how the surgery may affect you.

In some situations it will be too difficult or dangerous to remove even a small part of the tumour, or the doctors may think that other treatments are more suitable. Your surgeon or doctor will discuss the most appropriate type of operation with you and, if you like, with a close relative or friend. Before any operation, do ask questions so that you know exactly what's involved. No operation or procedure will be done without your agreement.

After your operation

The length of your stay in hospital will depend on the extent of the operation and how well you are. For about the first 12 hours after the operation, you'll be closely observed, probably in the intensive care unit (ICU/ITU). You will probably have frequent observations taken to begin with. These are known as neurological observations, or 'neuro obs'. They include checking how alert you are, testing your reflexes, checking that your pupils react to light as well as checking your pulse, blood pressure, the amount of oxygen in your blood and number of breaths each minute. At first you may be cared for on a machine which maintains your breathing (a ventilator).

It's likely that your head will be bandaged and you may have a tube in the site of the operation, which drains into a bottle. This is used to drain excess blood from the head wound and is usually removed within a day or two. Your face and eyes may be swollen and bruised after the operation. The swelling should go down within 48 hours and the bruising within a few days. You may also have a drip of salt water (saline) to replace any fluids you may have lost and to keep you hydrated.

You may have a headache when you wake up after the operation and you'll be given painkillers to help relieve this.

It's unusual to get a lot of pain after surgery to the brain, but tell your nurse or doctor if you are in pain or the pain starts to get worse.

These descriptions may sound dramatic but the effects of the operation should settle fairly quickly and once staff are confident with your condition you'll go back to the ward to continue your recovery.

Shunts

Brain tumours can cause a wide variety of symptoms.

These are usually caused by a rise in pressure within the brain (raised intracranial pressure). This happens when the tumour blocks the flow of the cerebrospinal fluid (CSF) around the brain (this is called hydrocephalus). A shunt (also called a ventricular catheter) may be inserted to drain excess fluid from the brain. This will stop any further rise in intracranial pressure.

A shunt is a long, thin tube that is placed in the brain and then threaded under the skin to another part of the body, usually into the lining of the abdominal cavity (peritoneum). The tube allows excess fluid from the brain to drain into the abdominal cavity where the body reabsorbs it. The shunt has valves in place so that fluid can drain away from the brain but not back towards it.

The shunt is not visible outside of the body and you won't be able to feel it.

Steroids and anticonvulsant drugs

Before and after brain surgery, you'll be given steroid therapy and often medicines known as anticonvulsant drugs to help to prevent seizures.

Steroid therapy

Steroids are drugs that are used to reduce the swelling that often surrounds brain tumours. Although steroids don't treat the tumour itself, they help to improve symptoms and make you feel better. They may be used before or after surgery, or during or after radiotherapy.

Side effects of steroids

If you are taking steroids for some time, you may have temporary side effects. These can include putting on weight, indigestion, raised blood pressure and a slightly greater risk of getting infections, such as thrush (candida) in the mouth. Some people also have mood changes, feel low or depressed, find it difficult to get to sleep or feel 'hyper' or over-active.

You may also develop a higher than normal level of sugar in the blood. If this happens, your doctor will prescribe drugs which you will need to take every day to bring your blood sugar level back to normal. You may have to do a simple daily test to check for sugar in your urine. You'll be shown how to do this.

If you take steroids for a long time you may notice that you put on weight or that your thigh muscles are weaker. Your skin may bruise more easily and feel thinner.

These side effects may seem hard to bear at the time, but it's important to remember that they are temporary and will gradually disappear as the steroid dose is lowered. While you are having steroid treatment you should carry a steroid card (which your doctor or nurse will give you) to show the type of steroid and the dose you are taking.

It's important not to stop taking steroids suddenly as this can make you very ill. Your doctor will gradually reduce the dose.

Anticonvulsant medicines

If you have had seizures or fits you may also have to take anticonvulsants (drugs to prevent epileptic fits). These medicines are often used for people who have brain tumours and also after brain surgery.

There are several different types of anticonvulsants. Some commonly used types include phenytoin (Epanutin®), Levetiracetam (Keppra®), carbamazepine (Tegretol®), sodium valproate (Epilim®) and lamotrigine (Lamictal®). Let your doctor know if you have any side effects. Sometimes it's necessary to take more than one type of anticonvulsant tablet.

Radiotherapy for brain tumours

Radiotherapy treats cancer cells by using high-energy rays to destroy the cancer cells while doing as little harm as possible to normal cells. It's usually given using beams delivered from outside the body (external radiotherapy).

Radiotherapy is often used after surgery to treat any cancer cells that may have been left behind. It can also be given to treat secondary brain tumours, or when a primary brain tumour can't be removed or has come back after surgery. Radiotherapy may sometimes be given along with chemotherapy tablets to treat high-grade gliomas.

Radiotherapy is given in the hospital radiotherapy department. It's usually given as a series of short, daily sessions from Monday to Friday, with a rest at the weekend. The length of your treatment will depend on the type and size of brain tumour, but it is usually 26 weeks. Some people will have different treatment plans and may have treatment on only three days a week. Your doctor will discuss your treatment plan with you beforehand.

You may need to wear a radiotherapy mask that covers the whole of your face and front of your head. This mask is usually made from perspex (a type of plastic) or from a type of mesh plastic, which is moulded to fit the shape of your face.

A radiotherapy mask keeps your head as still as possible during treatment. This is to make sure that exactly the right area is treated. Your mask will be made before your treatment is planned. It allows you to see and breathe normally but it may make some people feel claustrophobic. You will only have it on for a few minutes at a time and most people soon get used to it.

For secondary brain tumours and some high-grade tumours, a smaller dose of radiotherapy is given to the whole head, so a mask may not be needed.


A radiotherapy mask being used during treatment

Planning your treatment

Radiotherapy has to be carefully planned to make sure that it's as effective as possible. This is done using a CT scanner (sometimes called a CT simulator), which takes CT scans of the area to be treated. These CT scans provide lots of images from different angles to build up a three-dimensional picture of the area to be treated.

At the same time, therapy radiographers will take measurements from you which are needed for treatment planning. The radiographer's measurements and the information from the scans are fed into the radiotherapy planning computer to help your doctors plan your treatment more precisely.

Treatment planning is a very important part of radiotherapy and it may take a few visits before the clinical oncologist (the doctor who plans and supervises your treatment) is satisfied with the result.

Having your treatment

Before each session of radiotherapy the radiographer, who gives you your treatment, will position you carefully on the couch and make sure you are comfortable.

During your treatment, which will only take a few minutes, you'll be left alone in the room but you can talk to the radiographer, who will watch you carefully from the nextroom. Radiotherapy is not painful but you do have to be still for a few minutes during treatment.

Stereotactic radiotherapy and radiosurgery

These types of radiotherapy enable doctors to direct radiation more accurately at brain tumours. The aim is to deliver higher doses of radiotherapy to the tumour while doing as little harm as possible to surrounding brain tissue and to minimise the side effects of treatment. It is sometimes given after standard external radiotherapy or to treat small tumours that cannot be removed with surgery.

Stereotactic radiotherapy

This type of radiotherapy gives the treatment from a standard radiotherapy machine which has been adapted. The machine gives concentrated beams of radiation from several different angles which overlap at the brain tumour. This is done either by moving the machine during treatment or by aiming individual beams from a number of different directions.

The radiotherapy dose to the tumour is very high and the dose to surrounding healthy tissues is very low. Several doses are given.

Before treatment, several scans of the brain are taken. These scans are then analysed by computers to ensure that the radiotherapy is precisely targeted to the brain tumour. A special head frame will be made for you before you start treatment. This frame helps to keep your head still while having the radiotherapy.

This treatment is only available in specialist hospitals and is not suitable for everyone with a brain tumour. You could ask your clinical oncologist whether it would be appropriate in your particular situation.

Stereotactic radiosurgery (gamma knife)

This is a type of stereotactic radiotherapy. It's sometimes called gamma knife treatment, named after one of the machines that can be used to give this treatment. Unlike stereotactic radiotherapy, sterotactic radiosurgery is given over one session, as a single-dose treatment, taking about 4-5 hours.

It does not use a knife, but uses targeted beams of gamma radiotherapy given from many different angles, which cross at the point of the tumour. You will have several scans and x-rays to find the precise area for the treatment to be given. A special head frame will be made for you before your start treatment. Thos frame helps to keep your head still while having the radiosurgery.

Again, this treatment is only available in specialist hospitals and is not suitable for everyone with a brain tumour. It may be helpful to discuss with your clinical oncologist whether it's a suitable treatment for you.

Side effects of radiotherapy to the head Side effects can be mild or more troublesome depending on the amount of radiotherapy given and the length of your treatment. Radiotherapy can cause general side effects such as tiredness, headaches, hair loss and feeling sick (nausea).

Tiredness

As radiotherapy often makes you feel tired, try to get as much rest as you can, especially if you have to travel a long way for treatment each day.

JASCAP booklet on fatigue has helpful tips on ways of saving energy and dealing with tiredness.

Headaches

Some people have headaches while they are having their radiotherapy. These can be controlled with painkillers and sometimes steroids which will be prescribed by your doctors.

Hair loss

You will lose hair within the area treated. Most hair loss is temporary but, unfortunately, it may be permanent for some people. This will depend on the dose of treatment you have had. Sometimes hair grows back with a slightly different colour and texture and perhaps not as thickly as before. It usually starts to grow back within 23 months of finishing treatment.

Skin changes

Some people develop a skin reaction, similar to sunburn, while having radiotherapy. This normally happens 34 weeks after the start of treatment. People with pale skin may find that the skin in the treatment area becomes red and sore or itchy. People with darker skin may find that their skin becomes darker and can have a blue or black tinge. The amount of the reaction depends on the area being treated and the individual person's skin. Some people have no skin problems at all.

Your radiographers will be looking for these reactions but you should also let them know if you feel any soreness.

Staff at the radiotherapy department will be able to give you advice on skin care. As the skin is sensitive it is best not to over-expose it to the sun or cold winds. Try wearing a soft cotton or silk scarf or hat to cover the area when you go outside.

Somnolence (feeling drowsy)

Four to eight weeks after finishing after radiotherapy, you may find that you generally slow down, have very little energy and feel much less active. You may also feel drowsy and spend more time sleeping. It gradually gets better over a few weeks.

Feeling sick

Occasionally some people may feel sick but this can usually be treated effectively by anti-sickness drugs (called anti-emetics), which your doctor can prescribe. You may also find that food tastes different and you may have a metallic taste in your mouth. If you don‟t feel like eating, you can replace meals with nutritious, high-calorie drinks. These are available from most chemists and can also be prescribed by your GP. We have more information and helpful tips on how to cope with different eating problems in our diet and cancer section.

After your treatment

Some people find the symptoms of the brain tumour temporarily get worse after the treatment has finished. This can make them think their tumour is getting worse. In fact it is either a reaction to the radiotherapy treatment or may be because steroid treatment has been reduced or stopped.

If you find this happening to you it's important to discuss it with your doctor or nurse, who'll be able to provide the right treatment and support.

Chemotherapy for brain tumours

Chemotherapy is the use of special anti-cancer (cytotoxic) drugs, which work by disrupting the growth of cancer cells.

Chemotherapy is not used to treat all brain tumours. It may be used for people with high-grade primary brain tumours where the tumour has come back. In this situation chemotherapy is unlikely to be able to cure a brain tumour completely, but it can sometimes shrink a tumour down or slow its growth and so can reduce symptoms.

Chemotherapy drugs which may be used to treat primary brain tumours include: lomustine (CCNU), procarbazine, vincristine and temozolomide (Temodal®). Some are given as tablets or capsules, and some are given by injection into a vein (intravenously). Sometimes lomustine, procarbazine and vincristine are used together and this combination of chemotherapy drugs is known as PCV.

Another way of giving chemotherapy is by an implant which can be placed into the area of the brain tumour during surgery. These implants (called Gliadel® implants) are small gel wafers or discs which contain the chemotherapy drug carmustine. As the gel wafer dissolves, the drug is slowly released.

The type of chemotherapy you have will depend on the type and stage of the brain tumour. Chemotherapy to treat brain tumours can usually be given to you as an outpatient. Chemotherapy may sometimes be used after surgery, or with, and after radiotherapy in people who have just been diagnosed with a brain tumour.

The National Institute for Health and Clinical Excellence (NICE) is an independent body that was set up by the government. NICE assesses medicines and treatments and gives guidance to doctors on how they should be used in the NHS in England and Wales. The equivalent body in Scotland is the Scottish Medicines Consortium (SMC).

Current NICE guidance on the use of carmustine (Gliadel) implants and temozolomide recommends carmustine implants as a possible treatment for people with newly diagnosed high-grade glioma only if 90% or more of their tumour has been removed. People should have carmustine implants only at specialist treatment centres under the care of a team of experts. Temozolomide is recommended as a possible treatment for people with a type of high-grade glioma called a glioblastoma who are newly diagnosed and fit and well enough to have it.

Both of these drugs have been assessed by the SMC and have been approved for use in Scotland.

Side effects

Chemotherapy can cause side effects, which can be unpleasant, and for some people chemotherapy may have little effect on the tumour. So they will have the side effects without any noticeable benefits. The fitter a person is, the more likely they are to benefit from the chemotherapy and the less likely to have side effects.

Making decisions about treatment under these circumstances is always difficult. It will be helpful to discuss with your doctors the possible benefits and side effects of chemotherapy in your situation. You can also speak to our cancer support specialists.

Many people have few side effects and those that occur can often be well controlled with medicine. The main side effects are described here, together with some of the ways they can be reduced.

Lowered resistance to infection

While the drugs are acting on the cancer cells in your body they also temporarily reduce the number of normal white blood cells. When these cells are reduced you're more likely to get an infection and you may tire more easily. During chemotherapy your blood will be tested regularly and, if necessary, you may be given antibiotics to treat any infections.

If your temperature goes above 38C (100.5F), or you suddenly feel unwell even with a normal temperature, contact your doctor at the hospital straight away.

Anaemia

If the level of red blood cells in your blood is low you will become very tired and lethargic. You may also become breathless. These are symptoms of anaemia. If you become very anaemic, you may be given a blood transfusion.

Bruising and bleeding

Platelets are a type of cell that helps to clot the blood. If the number of platelets in your blood is low you will bruise very easily and may bleed heavily from even minor cuts or grazes. If you develop any unexplained bruising or bleeding, such as nosebleeds, blood spots or rashes on the skin, or bleeding gums, contact your doctor or the hospital immediately.

Feeling sick

Some chemotherapy drugs may make you feel sick (nauseated) and can also make you be sick (vomit). There are now very effective anti-sickness drugs (anti-emetics) to prevent or greatly reduce nausea and vomiting. Your doctor can prescribe these for you.

If you don't feel like eating during treatment, you could try replacing some meals with nutritious drinks or a soft diet - our section on eating well, has some useful tips on coping with eating problems.

Hair loss

The chemotherapy drugs commonly used to treat brain tumours don't usually cause hair loss but some may cause hair-thinning. If your hair does fall out while you are having chemotherapy, it will grow back over a period of 3−6 months.

Tiredness

It is important to remember that chemotherapy affects people in different ways. Some people find that they are able to lead a fairly normal life during their treatment, but many others find they become very tired and have to take things much more slowly. Just do as much as you feel like and try not to get too tired.

Although the side effects may be hard to bear at the time, they will gradually disappear once your treatment is over.

** JASCAP has separate information booklet on Chemotherapy.

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