Brain tumour, Benign (non-cancerous)

A benign (non-cancerous) brain tumour is a mass of cells that grows slowly in the brain. It usually stays in one place and does not spread.

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. Grade 1 tumours are the least aggressive and grade 4 are the most harmful and cancerous. Cancerous tumours are described as malignant. 

Low-grade brain tumours – grades 1 or 2 – tend to be slow growing and unlikely to spread, so they're usually classed as benign.

These pages focus on low grade brain tumours. For information about brain tumours graded 3 or 4, read high-grade (malignant) tumours.

What are the symptoms?

The symptoms of a low-grade or benign brain tumour depend on how big it is and where it is in the brain. Some slow-growing tumours may not cause any symptoms at first.

Eventually, the tumour can put pressure on the brain and may cause headaches and seizures (fits). The tumour can also prevent an area of the brain from functioning properly. For example, a tumour in the occipital lobe (at the back of the brain) may cause loss of vision on one side.

The symptoms of a low-grade or benign brain tumour depend on its size and where it is in the brain. Some slow-growing tumours may not cause symptoms at first.

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 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

Diagnosis

if you develop any of the symptoms of a benign 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 increased 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)

A brain tumour is diagnosed 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.

Under anaesthetic, a small hole (burr hole) is made in the skull and a very fine needle is used to obtain a sample of tumour tissue. You will probably need to stay in hospital for a few days.

Who is affected?

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

There are about 4,300 people diagnosed with benign brain tumours in the UK each year. The majority of these are low-grade gliomas, a type of tumour that starts in the supportive tissue of the brain.

Although the cause of most benign brain tumours is not known, it is thought that certain genetic conditions and previous radiotherapy treatment to the head may increase the risk of one developing.

Benign brain tumours that are present at birth (congenital) are caused by abnormal development of the baby in the womb. It is not fully understood what causes non-congenital tumours.

Some genetic conditions can increase your risk of a benign 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 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 there is an increased risk if there is family history of brain tumours and exposure to chemicals (such as formaldehyde).

Can mobile phones cause brain tumours?

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.

Treatment

Benign brain tumours can be serious if they are not diagnosed and treated early. Although they remain in one place and do not usually spread, they can cause harm by pressing on and damaging nearby areas of the brain. 

Many benign brain tumours can be surgically removed and don't come back once they have been removed, causing no further problems. However, grade 2 gliomas will often grow back after treatment and have the potential to change into high-grade or malignant (cancerous) tumours, which are fast-growing and likely to spread. This change is called mutation.

Your treatment will depend on the type and location of the tumour, and your outlook will depend on whether the tumour grows back and whether it mutates (changes).

Most benign tumours are removed with surgery and do not normally come back.

However, some slow-growing tumours (mainly gliomas) will grow back after treatment and have the potential to change into high-grade or malignant (cancerous) tumours. High-grade tumours are fast-growing and likely to spread. Therefore, it's essential to have follow-up appointments to monitor your condition.

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 that you'd like to ask the specialist. For example, you may want to find out the advantages and disadvantages of particular treatments.

Medication

You may be given medication to help treat symptoms of a brain tumour before or after surgery, including:

• anticonvulsants to prevent seizures (fits)
• corticosteroids to reduce swelling around the tumour

Surgically removing a brain tumour

The aim of surgery is to remove as much of the tumour as possible without damaging the surrounding tissue. You will be given a general anaesthetic (this will put you to sleep) and an area of your scalp will be 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.

Radiosurgery

Some tumours are situated deep inside the brain and are difficult to remove without damaging surrounding tissue. In such cases, radiosurgery may be used to treat the tumour.

During radiosurgery, a dose of high-energy radiation is focused on the tumour to kill it. The treatment is completed in one session, recovery is quick and an overnight stay in hospital is not usually required. Radiosurgery is only available in a few specialised centres in the UK and is only suitable for a selected group of people, based on the characteristics of their tumour.

For some tumours in the base of the skull, the patient may be referred abroad for specialised proton radiotherapy.

Chemotherapy and radiotherapy

Occasionally, chemotherapy and radiotherapy may be used to shrink a benign tumour.

Chemotherapy uses medication to kill tumour cells and can be given as a tablet, an injection or a drip. Radiotherapy involves controlled doses of high-energy radiation, usually X-rays, to kill the tumour cells.

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

Recovery

After treatment, several types of therapy are 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.

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

These therapies aim to 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. On rare occasions epilepsy lasts longer than six months.

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 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.

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

Case Study 1 - 'It’s hard but I’ve had to learn to live with it'

In September 2003, Joanne Glazier Reitano was diagnosed with an inoperable brain tumour. She talks about how living with a brain tumour has affected her.

"The first sign I had that things weren’t right was when I kept ‘zoning out’. At first I wasn’t really aware that it was happening – but it was like I was just switching off from the real world. The incidents probably only lasted a minute, and I wouldn’t lose consciousness, but I’d ‘come back’ to the real world and would have completely lost track of what I was saying and doing. 

“I put it down to stress. There had been lots of redundancies at work and it had generally been an incredibly stressful year. But I began to be quite concerned when I 'zoned out' in the middle of a presentation I was giving. It was obvious to everyone who was there that something was wrong.  

“I went to my GP about it and he diagnosed stress, so I didn’t worry too much and got on with my normal life. 

“By the following Easter I wasn’t feeling well at all. I’d started a new job and had no energy and was taking lots of antidepressants. I was putting on weight rapidly and wasn’t feeling at all good.

“I was also having a number of mysterious accidents. I banged my head badly when I was at work and am not sure exactly how I did it. Once I took the dog for a walk and when I came back I was covered in mud. I still don't know how that happened. I was having memory problems too.

“My doctor referred me for an MRI scan and I was also sent to London for an ECG. While I was waiting for the results, I went away on holiday. But I was grumpy, didn’t want to join in with anything and just didn’t behave like I usually did.

"On my return, there was a letter waiting for me that told me I had epilepsy. It was such a shock. I was devastated. I made an appointment with my consultant and had a huge list of questions to ask him, but when I got there, he said, ‘Jo, epilepsy is the least of your problems. You have a brain tumour.’ 

"I didn’t know what to think. It was such a shock to hear those words. There was just this whole mess of thoughts in my head. The consultant couldn’t tell me much as he didn’t know if the tumour was benign or malignant. Two weeks later, I was sent for a biopsy.

"I was in hospital for a week and was a complete wreck. They discovered that I had a slow-growing grade 2 oligodendroglioma tumour. But because the tumour was deep-set in the left temporal lobe, it was too dangerous to operate on. 

"It was a very delicate period. I hadn’t been told where to go for support and I was very down and angry. Although it was good news that it was slow growing, I just didn’t want to deal with it. I didn’t want it in my head and I didn’t want to be in this situation. Eventually, I was put in touch with a support group and that did help. It made me realise that I wasn’t the only one in this situation and that did give me some comfort.

"I started having radiotherapy three months after my diagnosis. I had it five days a week for six weeks. I was warned that I’d lose all my hair, which I did, and I was left with a circle of hair at the top of my head. But the radiotherapy helped. After I’d finished the course, I got the news that the tumour was lying dormant. 

"In September 2006 a scan showed that the tumour was growing again. I went into shock when I heard the news. 

"I started chemotherapy in October 2006 and had six cycles. I had 11 days of chemo with a four- to five-week gap in between. I felt so ill while it was going on. But while I was in the middle of chemotherapy, I got married to my boyfriend Salvo. Afterwards, my scan showed that the tumour was dormant again.

"My life will definitely be shortened by this tumour but I’m living it to the best of my ability. I have bad pains that move around my body and my balance is quite badly affected. I fall over really easily.

"My writing and spelling is appalling these days and my memory is ruined because the tumour is pressing against that part of my brain. My reading is also affected. I get stuck on certain words, just like a child.

"But I have to be positive. It’s hard but I’ve had to learn to live with it. I didn’t, and still don’t, want to be defeated by it. I have a very loving and supportive husband and family. I also discovered that keeping my mind occupied has really helped and I’ve developed a strong interest in gardening, which I find very therapeutic.

"Practical help has been invaluable. A friend filled in all my benefit forms for me and I’ve nominated her to have power of attorney, so she always deals with that side of things. When you have something wrong with your brain, you really need that kind of help."

This case history was provided by Brain Tumour UK.

Case Study 2 - 'We found Maisie’s tumour before it was too late'

Maisie Dury was diagnosed with a brain tumour when she was just two years old. Her parents, Vanessa and Ollie, describe their experience of Maisie’s diagnosis, treatment and recovery.

"When our lively, loving, mischievous daughter turned two-and-a-half in 2007, we noticed that she sometimes looked a bit vacant. We weren’t unduly worried but mentioned it to our doctor who suggested it could be a form of epilepsy. She referred us to a specialist.

"Over the next few weeks, Maisie began to have seizures, during which she would shake and appear to lose control. The hospital told us that Maisie’s condition was not urgent and we would be seen by a specialist in three months.

"A parent’s instinct told us that something was more seriously wrong with our little girl, so we pleaded for her to be seen earlier.

"A neurologist at St George’s Hospital, in south-west London, saw Maisie a few weeks later. She was diagnosed with a common form of epilepsy and given medication for the seizures. We were relieved. We had a diagnosis and could help her. We were given leaflets and information and felt better. Although we were concerned about the epilepsy, her condition wasn’t life threatening. How wrong we were.

"Fortunately the neurologist suggested Maisie had a routine MRI scan (which is not always the case). We went to the appointment on a Monday morning in June 2007 expecting to be home by lunchtime. That afternoon she was admitted to a children’s neurology ward."

Maisie had a brain tumour.

"Words can’t describe the devastation we felt. The following day we were told Maisie had a tumour in the centre of her brain, an unusual position. We were in complete shock. There were no leaflets to read and we didn’t know what would happen to her. Maisie’s surgeon was amazing. He took time to explain everything and went ahead with the operation the next day – the longest day of our lives.

"Maisie has recovered well. Fortunately the tumour was ‘low grade’ and because it was discovered in time it could be successfully removed by the surgery. But Maisie is still young and the effects of brain surgery are long lasting. She had a central neurocytoma, which is a rare tumour among children and because so little is known about brain tumours in general, the future is uncertain.

"Maisie continues to be closely monitored with regular scans. But we were lucky for many reasons – from having a doctor who referred Maisie immediately, to securing a neurologist’s appointment early and getting an MRI scan quickly. We found Maisie’s tumour before it was too late.

"We also had amazing support from the surgeons, neurologists and hospital child psychologists who help us cope with the effects of Maisie’s surgery and treatment.

"As a parent you never expect your child to get a brain tumour, but it can happen. There are so many children out there who do not get diagnosed early enough and whose symptoms are often missed. More children die of brain tumours in the UK than from any other cancer. We think of those children and families every day and are working to support the brain tumour cause in whatever way we can."

This case history was provided by Brain Tumour Research.

Case Study 3 - 'Having a brain tumour makes you open your eyes more and appreciate life'

Case Study 4 - 'Since my illness life has changed for me'

Case Study 5 - 'We wake up every day thinking how lucky we are'

Wayne Chessum was diagnosed with a brain tumour after becoming ill when he returned from a family holiday. Wayne's wife Debbie tells the story of his diagnosis, treatment and recovery.

"It was in January 2008 when we had just returned from a holiday in Florida that Wayne first started to feel poorly. He thought it was a cold. Wayne went to the GP a number of times continuing to feel unwell and was treated for an inner-ear infection.

"Then he spent the whole of one weekend in bed and didn’t want to eat or talk. We visited the GP who was sufficiently concerned to refer him to Grantham & District Hospital where Wayne had a CT scan. They found a tumour in his brain. This was a massive shock to us, however, Wayne felt relief that they had found something wrong as he had been feeling so unwell for a couple of months.

"Wayne was transferred to Queen’s Medical Centre in Nottingham, which specialises in neurosurgery, where he underwent a craniotomy to remove what was diagnosed as a benign haemangioblastoma in his cerebellum. Whilst Wayne was in hospital he didn’t see his children for seven days. We had left our young daughter Hollie with her grandparents when Wayne was referred for the CT scan.

"The following year, we had another devastating blow when a scan revealed that there was some regrowth of the tumour – it is pretty much impossible for surgeons to be absolutely certain whether they have managed to remove all traces of a brain tumour, particularly when trying to access an area as deep into the brain as the cerebellum.

"Wayne was recommended for stereotactic radiosurgery at the Royal Hallamshire Hospital in Sheffield. After the radiosurgery we were told it was a waiting game. The procedure results in the tumour actually swelling initially and we were told that this would take around two years to settle down. In fact it wasn’t until three years later, in October 2012, that the neurosurgeon at Nottingham was able to tell Wayne that his tumour was static with no regrowth – the radiosurgery which took place in Sheffield appears to have been a success, but he will continue to have MRI scans every 12 months. We now hope to find that subsequent scans will show the tumour reducing.

"Since Wayne’s diagnosis and craniotomy, he has had to retire from his job as a prison officer and he is now self-employed doing painting, decorating, kitchen and bathroom fitting, tiling, fence building and many other jobs. He struggles with balance and also with co-ordination in the dark, but despite these difficulties he has succeeded in getting back to playing cricket – one of the biggest loves of his life!

"Before Wayne was diagnosed, he was extremely fit and he believes this dramatically assisted the speed of his recovery. Wayne has always been an enthusiastic sportsman and played all sports. He maintains a high level of fitness to give himself the best chance of recovering from further treatment if required.

"Until Wayne discovered he had a brain tumour, we were oblivious to how common this condition was and have since come across two other cases just in our village: one of a boy (who is now a teenager); and another of a lady who has since passed away.

"We never realised how prevalent brain tumours were or how devastating it is when you hear that a loved one has been diagnosed with this condition. His neuro-surgeon told Wayne that if the haemangioblastoma had been detected 10 years earlier, then Wayne would probably no longer be with us. Fortunately medical understanding has moved on a little. With more investment in research, who knows where we could be in terms of treatments for brain tumours 10 years on?

"Wayne now tries to live life to the full and enjoy every day; he commented that it is not all bad news – since his surgery he no longer suffers from the effects of hangovers if he happens to over indulge! We wake up every day thinking how lucky we are that we are all still here and every time we go to the hospital we thank the surgeons for what they have done for Wayne."

This case history was provided by Brain Tumour Research.