What should I do?
If you think you have this condition you should see a doctor within 48 hours.
How is it diagnosed?
Your doctor may suspect a brain tumour based on your symptoms. You may then be referred to a specialist for brain imaging (computerised tomography [CT] or magnetic resonance imaging [MRI] scans) and further investigation.
What is the treatment?
If you are diagnosed with a brain tumour, then the choice of treatment will depend on:
- the origin of the tumour
- the tumour’s location
- the tumour’s size
- your general health.
Brain tumours can be treated with surgery in combination with chemotherapy and/or radiotherapy.
When to worry?
If you develop any of the following symptoms then you should see a doctor immediately:
- worst headache of your life
- severe, persistent headache
- new visual problems such as loss of vision, double vision or blurred vision
- sudden weakness of the face, arms or legs.
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.
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.
Read more about the symptoms of a malignant brain tumour.
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.
Read more about the possible causes of a malignant brain tumour.
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 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.
For more information, go to Cancer Research UK's page on statistics and outlook for brain tumours.
Secondary brain tumours are serious as they have already spread throughout the body. Treatment aims to improve symptoms and prolong life.
Read more about treating a malignant brain tumour.
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.
Read more about recovering from treatment for a malignant brain tumour.
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 in 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.
Read further information about living with a brain tumour on Brain Tumour UK's website.
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.
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
- partial loss of vision or hearing
- 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
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.
Some genetic conditions can increase your risk of a primary malignant brain tumour. These conditions include:
- 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.
Read mobile phone safety for more information.
If you develop any of the symptoms of a brain tumour, such as a persistent and severe headache, see your doctor.
Your doctor 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).
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.
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.
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
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 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 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.
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.
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.
Epilepsy may affect some patients for up to six months or longer 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 doctor 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.
It is safe to have sex after treatment for a benign 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.
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 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.
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.
You may be eligible for income support, disability living allowance or attendance allowance.
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.
Read more information about occupational therapy.
After collapsing at work, Alan was diagnosed with a brain tumour. He tells his story.
"The first time I became aware that something could be wrong was when I was 29. I had a seizure and collapsed in my office. When I was taken to the local hospital for a CT scan, doctors could see something on my brain. An MRI scan showed it was a tumour.
"The tumour was found to be a grade 2 astrocytoma in the right temporal lobe and was quite close to the surface. On one hand, this was good news because it was relatively slow growing but, on the other hand, there’s no cure for it.
"The first treatment I had was brachytherapy, where a radioactive seed is planted into the centre of the tumour and then removed after four weeks. This shrank the tumour. After that, I had MRI scans on a six-monthly basis.
"During 2002 and 2003 I had clean MRI scans. The tumour was still there, of course, but it wasn’t growing. Then in 2004 I had a scan that showed that the tumour had regrown and, because of the rate at which it had grown, it had become more aggressive. It was now a glioblastoma multiforme (GBM).
"During this time I’d been doing a lot of research and had gone to see two specialists privately. I’d discovered that one of them was offering a new treatment with two relatively new chemotherapy drugs, so I shifted my treatment to his unit in Birmingham.
"I had a craniotomy in 2004. This involves removing as much of the tumour as possible and implanting gel 'wafers' that contain the chemotherapy drug Gliadel into the tumour bed. I also had external radiotherapy. Luckily, I recovered quite quickly from the surgery. I was in hospital for about four days afterwards and then I was allowed to go home.
"Until September 2006 I was clear, then a scan revealed that the tumour had regrown. So in March 2007 I had further surgery and the Gliadel wafers were implanted again. I also had chemotherapy of five days on and 23 days off, and I’m still having it. I’m now on my 13th round. It’s tiring but it’s a fairly non-toxic chemotherapy and I’m lucky in that I’ve been able to tolerate it.
"I have had eight or nine head operations in total, which obviously isn’t pleasant but, due to the nature of the illness, it had to be done.
"I just get on with living for now. I got married in 2005 and I still work, although part-time at present. I have scans every two months and chemotherapy every month, and that’s how life is for me right now."
This case history was provided by Brain Tumour UK.