Introduction 

A malignant brain tumour is a fast-growing cancer that spreads to other areas of the brain and spine.

Most malignant brain tumours are secondary cancers, which means they started in another part of the body and spread to the brain. Primary brain tumours are those that started in the brain.

There are different types of primary malignant brain tumour, depending on the type of brain cells they have grown from. The most common type is a glioma, which accounts for more than half of all primary brain tumours.

Generally, brain tumours are graded from 1 to 4 according to their behaviour, such as how fast they grow and how likely they are to spread. A malignant brain tumour will be either grade 3 or 4, whereas grade 1 or 2 tumours are usually classed as benign or non-cancerous brain tumours. These pages focus on malignant brain tumours. Read benign brain tumours for information about brain tumours grade 1 or 2.

 





 

Children

This topic covers malignant brain tumours in general and applies to both adults and children.

Macmillan has specific information about brain tumours in children, including medulloblastoma, a brain tumour that mainly affects children.

Children's Cancer and Leukaemia Group also have a useful page about medulloblastoma and its treatment.

What are the symptoms?

The symptoms of a malignant brain tumour depend on how big it is and where it is in the brain.

The tumour can put pressure on the brain and may cause headaches and seizures (fits). It can also prevent an area of the brain from functioning properly.

 

Who is affected?

Brain tumours can affect people of any age, including children.

There are about 5,000 new cases of malignant (cancerous) brain tumours in the UK each year. Most are caused by cancer that starts somewhere else in the body.

The exact cause of primary malignant brain tumours, which start in the brain, is unknown. However, an underlying genetic disease, such as neurofibromatosis, can increase your risk of developing one.

Treatment

Primary tumours

A primary malignant brain tumour needs to be treated as soon as possible because it can spread and damage other parts of the brain and spinal cord.

The tumour is usually operated on and as much of it as possible is removed. This may be followed with radiotherapy, chemotherapy or a combination of both. However, malignant tumours will often return.

The outcome for malignant primary brain tumours depends on a number of things, such as the type and location of the tumour and how ill you were when diagnosed.

 

Secondary tumours

Secondary brain tumours are serious as they have already spread throughout the body. Treatment aims to improve symptoms and prolong life.

 

Recovery

After treatment, several types of therapy will be available to help you recover.

Your doctor can refer you to a counsellor if you want to talk about the emotional aspects of diagnosis and treatment. There are also many organisations and helplines, such as Brain Tumour UK, that provide information and support.

 

Living with a brain tumour

Living with a brain tumour is not easy. The future can look very unpredictable and the unknown can be frightening.

As well as medical worries about tests, treatments and side effects, it is also common for patients to worry about life’s practicalities. For example, patients may worry about who will care for their family when they feel too ill to do so.

This panic and anxiety is a natural response and one that will affect everyone concerned. Changes in daily routines and responsibilities are often necessary and this is something that involves the whole family. Try to ensure that everyone knows what is happening and has an idea of what to expect. 

The following are a few suggestions that may help you, your family and close friends deal with the changes in your lives:


Seek accurate medical information about the disease and your treatment options.

Make sure you are involved in decisions about your care and treatment. This can help to dispel the fear of the unknown and the feeling that you do not have any control of what is happening to you.

Take a notepad with you if you find it difficult to remember questions and the answers, and write things down to refer to later. 

Set your own limits according to how you feel. Do not push yourself to perform at the level you were before the diagnosis and think you have to carry on as usual. 


 

Support for carers

Being a carer is not an easy role. When you are busy responding to the needs of others, it can deplete your reserves of emotional and physical energy and make it easy for you to forget your own health and mental wellbeing.

Research on carers’ health shows that high numbers of carers suffer health effects through caring. If you are trying to combine caring with a paid job or looking after a family, this can cause even more stress.

But neglecting your own health does not work in the long term. If you are caring for someone else, it’s important to look after yourself and get as much help as possible. It is in your best interests and those of the person you are caring for.

For more information on the support available to you and benefits you may be entitled to, visit the Carers Direct website.

 


Malignant gliomas

Most malignant brain tumours develop from the glial tissue, which supports the nerve cells of the brain. These tumours are known as gliomas.

Gliomas can be separated further, depending on the cells they developed from. For example:


an astrocytoma develops from cells thought to provide the brain's framework

an oligodendroglioma develops from the cells that produce the fatty covering of nerves

an ependymoma develops from the cells that line the cavities in the brain


 

Symptoms of a malignant brain tumour 

The symptoms of a malignant brain tumour depend on how big it is and where it is in the brain.

When symptoms do occur it is because the brain tumour is either putting pressure on the brain or preventing an area of the brain from functioning properly.

Increased pressure on the brain

If the tumour causes an increase in pressure inside the skull it can lead to the following symptoms:


epilepsy or fits, which can be either major seizures or twitching in one area of the body

severe, persistent headache

irritability, drowsiness, apathy or forgetfulness

vomiting, which is sometimes sudden and for no apparent reason

dizziness

partial loss of vision or hearing

hallucinations

personality changes, including abnormal and uncharacteristic behaviour


It is important to see a doctor if you develop a persistent and severe headache that does not appear to have any obvious cause, especially if you also have unexpected vomiting.

 

Loss of brain function

Different areas of the brain control different functions, so any loss of brain function will depend on where the tumour is located. For example, a tumour affecting: 


the frontal lobe – may cause changes in personality, weakness in one side of the body and loss of smell

the parietal lobe – may cause difficulty in speaking, understanding words, writing, reading, co-ordinating certain movements and there may also be numbness in one side of the body

the occipital lobe – may cause loss of vision on one side

the temporal lobe – may cause fits or blackouts, a sensation of strange smells and problems with speech and memory

the cerebellum – may cause a loss of co-ordination, difficulty walking and speaking, flickering of the eyes, vomiting and a stiff neck

the brain stem – may cause unsteadiness and difficulty walking, facial weakness, double vision and difficulty speaking and swallowing


 


Brain tumour grades


Grade 1 and 2 (low-grade) brain tumours are slow growing, less likely to come back if they are removed completely and unlikely to spread. For more information, read Benign (non-cancerous) brain tumours.

Grade 3 and 4 (high-grade) brain tumours are malignant (cancerous). They are faster growing and likely to spread.


 

Causes of a malignant brain tumour 

Most malignant brain tumours are caused by a cancer that started somewhere else in the body and spread to the brain through the bloodstream.

The cause of primary malignant brain tumours (cancerous tumours that start in the brain) is not fully understood.

Underlying disease

Some genetic conditions can increase your risk of a primary malignant brain tumour. These conditions include:


neurofibromatosis

tuberous sclerosis

Turcot syndrome

Li-Fraumeni cancer syndrome

von Hippel-Lindau syndrome

Gorlin syndrome


These conditions tend to cause malignant gliomas (tumours of the glial tissue, which binds nerve cells and fibres together) that appear in childhood or early adulthood, whereas most gliomas start later in adulthood.

 

Other possible causes

Radiotherapy to the brain increases your risk of a brain tumour, although this is still uncommon.

It is also thought that you are at an increased risk if you have a family history of brain tumours and are exposed to chemicals (such as formaldehyde).

 

Mobile phone safety

There have been reports in the media about a possible connection between brain tumours and the radiofrequency (RF) energy emitted by mobile phones. RF energy produces heat, which can increase body temperature and damage tissue exposed to it.

It is thought that the amount of RF energy people are exposed to by mobile phones is too low to produce significant tissue heating or an increase in body temperature.

However, research is under way to establish whether RF energy has any effects on our health in the long term. No definitive conclusions have yet been reached.

 

Diagnosing a malignant brain tumour 

If you develop any of the symptoms of a brain tumour, such as a persistent and severe headache, see your GP.

Your GP will examine you and refer you to a specialist if necessary.

They will examine the back of your eye and look for changes to the optic disc (the inside of the back of the eye) caused by an increase in pressure inside the skull. Raised pressure in the skull may be a sign of a tumour.

If a growth is suspected, you will be referred to a neurologist (brain and nerve specialist).

 

Referral to a specialist

The specialist will ask you about your medical history and symptoms. They will examine your nervous system, which may include tests of your:


reflexes, such as your swallow reflex and knee-jerk reflex

facial muscles (testing whether you can smile or grimace, for example)

hearing and vision

limb strength

balance and co-ordination

skin sensitivity to pinpricks, heat and cold

mental agility (simple questions or arithmetic)


Diagnosis of brain tumour is made based on your symptoms, examinations and the results of certain tests (see below).

Tests

The most common tests used to help diagnose a brain tumour include:


computerised tomography (CT) scan – this produces a detailed picture of your brain using a series of X-rays

magnetic resonance imaging (MRI) scan – this produces a detailed picture of your brain using a strong magnetic field and radio waves

electroencephalogram (EEG) – electrodes record your brain activity


If a tumour is suspected, a biopsy (surgical removal of a small piece of tissue) may be taken to establish the type of tumour and the most effective treatment.

A biopsy involves making a small hole in the skull and using a fine needle to obtain a sample of tumour tissue. It involves a few days in hospital.

 

High-grade brain tumour: John's story

In 2006, John was diagnosed with a grade 4 tumour that was cancerous and fast growing. John and his wife Karen describe the emotions they went through when he was diagnosed and explain how their lives have been affected.

 

Treating a malignant brain tumour 

If you have a malignant brain tumour, you'll usually need surgery to remove as much of the tumour as possible. Radiotherapy, chemotherapy or both are then used to treat any remaining tumour tissue.

However, most malignant brain tumours return after they have been treated. At this point, the aim of treatment is to extend life for as long as possible and treat any symptoms. 

This page explains the treatment options for both primary and secondary brain tumours (those that started in the brain and those that spread to the brain from elsewhere in the body).

Your healthcare team

Many hospitals use multidisciplinary teams (MDTs) to treat brain tumours. These are teams of specialists who work together to decide about the best way to proceed with your treatment.

Your team may include:


a neurosurgeon, who will operate on your brain

a neurologist, who will treat illness caused by the tumour and manage your chemotherapy, if necessary

an oncologist, who will administer radiotherapy and chemotherapy

a specialist nurse, who will give you information and support


You should be given the name and contact details of a key worker, who will support you during your brain tumour treatment. 

Choosing a treatment

Deciding on the treatment that's best for you can often be confusing. Your team will recommend what they think is the best treatment option, but the final decision will be yours.

Before visiting hospital to discuss your treatment options, you may find it useful to write a list of questions you'd like to ask the specialist. For example, you may want to find out the advantages and disadvantages of particular treatments.

 

Primary tumours

Surgery

Most primary tumours will be removed using surgery. They will then usually be treated with radiotherapy, chemotherapy or both afterwards (see below), to reduce the risk of the tumour coming back. 

Surgery aims to remove as much of the tumour as possible, without damaging surrounding tissue.

You are given a general anaesthetic (put to sleep) and an area of your scalp is shaved. A section of the skull is cut out as a flap to reveal the brain and tumour underneath. This is known as a craniotomy. The surgeon can then remove the tumour.

You may then be given photodynamic therapy, where the surgeon injects a light-sensitive drug into your veins, which is taken up by the remaining cancer cells. When a laser is focused on these cancer cells, the drug becomes active and kills them.

 

Chemotherapy and radiotherapy

Some tumours situated deep inside the brain are difficult to remove without damaging surrounding tissue. In this case, the tumour may just be treated with chemotherapy, radiotherapy or both.

During radiotherapy, a dose of high-energy radiation is focused on the tumour to stop the cancer cells multiplying. The radiation is a lower intensity than that used in radiosurgery (see below), and is given over a period of time.

Chemotherapy is medication used to kill any cancerous cells, and may be given as tablets, an injection or implants. Carmustine and temozolomide are both chemotherapy drugs used in the treatment of high-grade brain tumours, and are described below.

Carmustine implants are small wafers placed at the tumour site when the tissue has been surgically removed. As they dissolve, they release carmustine to slow or stop growth of cancerous cells.

Carmustine implants may be used to treat gliomas in an advanced stage of growth. In 2007, the National Institute for Health and Care Excellence (NICE) issued guidelines on the use of Carmustine implants to treat gliomas. NICE has approved them as treatment for newly diagnosed malignant gliomas, but only where 90% or more of the tumour has been surgically removed.

Carmustine implants need to be implanted immediately following surgery and before surgery is complete. This means your surgical team must be prepared to use them in advance if the removal of 90% of the tumour looks possible.

Possible side effects of carmustine implants are brain oedema (fluid in the brain), seizures and infection in the brain.

Temozolomide is a chemotherapy drug given to some patients with a malignant glioma to slow down progression after initial treatment, or if the tumour has returned.

Possible side effects of temozolomide include anorexia, constipation, fatigue, headache, nausea and vomiting.

Radiosurgery

Radiosurgery involves focusing a high-energy dose of radiation on the tumour to kill it. It is different to radiotherapy in that the radiation is:


a higher intensity

focused on a smaller area of the brain

given in one session (rather than over a period of time)


This means you will usually not experience any of the usual side effects of radiotherapy, such as skin reddening and hair loss. Recovery is good and an overnight stay is usually not required.

However, radiosurgery is only available in a few specialised centres across the UK and is only suitable for a selected group of people, based on the characteristics of their tumour.

 

Secondary tumours

A secondary brain tumour indicates serious, widespread cancer that usually cannot be cured. Treatment aims to improve symptoms and prolong life by shrinking and controlling the tumour. Treatment may include:


corticosteroids, which are tablets to reduce swelling and pressure in the brain

chemotherapy and radiotherapy (see above)

anticonvulsant medicines, which prevent epileptic fits

painkillers to reduce headaches

anti-nausea drugs, which can help relieve sickness caused by increased pressure inside the skull


What if I choose not to have treatment?

If your tumour is at an advanced stage or in a difficult place in the brain, a cure may not be possible and treatment may only be able to control the cancer for a period of time. This means you will be getting the side effects of treatment without getting rid of the tumour.

In this situation it may be difficult to decide whether or not to go ahead with treatment. Talk to your doctor about what will happen if you choose not to be treated, so you can make an informed decision.

If you decide not to have treatment, you will still be given palliative care, which will control your symptoms and make you as comfortable as possible.

 


Side effects

Side effects of chemotherapy and radiotherapy can include tiredness, headaches, hair loss, nausea and reddening of your skin.


side effects of radiotherapy

side effects of chemotherapy


Recovering from a malignant brain tumour 

After being treated for a brain tumour, you may be offered physiotherapy, speech therapy or occupational therapy.

These therapies can speed up your recovery and help you cope with any problems caused by the tumour.


An occupational therapist will recommend any equipment or alterations to your home that may help you carry out daily activities.

A speech therapist will help you with any speech or swallowing problems.

A physiotherapist will help you to use parts of the body that have been affected by the tumour.


The National Institute for Health and Care Excellence (NICE) has made recommendations on the standards of care that brain tumour patients should receive. For more information, read the Improving Outcomes guidelines. 

Epilepsy may affect some patients for up to six months after surgery. In rare cases epilepsy may continue for longer.

 

Getting back to normal

Driving and travelling

If you drive and have, or have had, a brain tumour, you must give up your licence and notify the DVLA. They will speak to your GP to determine when you can drive again.

With up-to-date scans and advice from your medical team, you may be allowed to drive again once an agreed period has passed and you have successfully completed a medical test to determine your ability to control a vehicle.

Flying is usually possible from three months after treatment.

 

Sports and activities

After you have been treated for a brain tumour, you must permanently avoid contact sports, such as rugby and boxing. You can start other activities again, with the agreement of your doctor, once you have recovered.

Swimming unsupervised is not recommended for around one year after treatment, as there is a risk that you could have an epileptic fit while in the water.

 

Sex

It is safe to have sex after treatment for a brain tumour. Women may be advised to carry on using contraception for up to a year after chemotherapy or radiotherapy. Your specialist will also discuss the implications of any medications needed.

 

Going back to work

You will become tired more easily following treatment for a brain tumour. You may wish to return to work and normal life as soon as possible, but it is a good idea to return part-time to begin with and only to go back full-time when you feel able to.

If you have experienced seizures, do not work with machinery or at heights.

 

Help and support

A brain tumour is often life-changing. You may feel angry, frightened and emotionally drained. Your doctor or specialist should be able to refer you to a social worker and counsellor for help with the practical and emotional aspects of your diagnosis.

Your recovery and the time it takes to get back to driving and working can depend on several factors, including: 


the type of tumour you had

the treatment you had

your job


There are many organisations and helplines, such as Brain Tumour UK, that provide information and support.

 

Social support


If you have been diagnosed with a brain tumour, your treatment and medical care will probably be the first thing on your mind. But there are other aspects of your life to think about and it is important to know exactly what kind of assistance is available and where you can get it.

If you are finding it hard to cope with day-to-day life, talk about your needs with your doctor or nurse, who will refer you to a social worker. Your social worker will assess exactly the kind of help you need (see below). 

 

Care attendants

Care attendants can help with housework, dressing and washing, or even just keep you company and give your carer a break. Look into this as soon as you can, as many care attendants have waiting lists.

Carers Trust is an organisation in England and Wales that helps carers by visiting homes and taking over the responsibilities of care for a while. Visit the Carers Trust website at www.carers.org, or phone 0844 800 4361.

 

Meals on wheels

Contact your local council about its meals on wheels service It will usually be able to offer financial assistance to help pay for this. 

See meals on wheels on GOV.UK for details of your eligibility.

 

Benefits

You may be eligible for income support, disability living allowance or attendance allowance. Get in touch with the Benefit Enquiry Line for more details on 0800 882 200 (textphone 0800 243 355) or online at www.dwp.gov.uk.

 

Home adaptations

Occupational therapists provide a detailed assessment of your needs at home, making life easier by arranging equipment and making adaptations to your home.

The aim is to create a comfortable and practical place to live during your treatment. This could mean anything from putting a shower downstairs to adding handrails around the house.