Brain tumour, malignant (cancerous)
A malignant brain tumour is a fast-growing cancer that spreads to other areas of the brain and spine.
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 grow back after treatment. A malignant brain tumour is either grade 3 or 4, whereas grade 1 or 2 tumours are usually classed as benign or non-cancerous.
Most malignant 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.
These pages focus on high-grade brain tumours. For information about grade 1 or 2 tumours, read our pages on low-grade (benign) brain tumours.
Signs and symptoms
The symptoms of a malignant brain tumour depend on how big it is and where it is in the brain.
Common symptoms include:
- severe, persistent headaches
- seizures (fits)
- persistent nausea, vomiting and drowsiness
- mental or behavioural changes, such as memory problems or changes in personality
- progressive weakness or paralysis on one side of the body, vision problems, or speech problems
See your GP if you have persistent symptoms of a brain tumour. While it’s unlikely to be a tumour, it’s best to be sure by getting a proper diagnosis.
Types of malignant tumours
Most malignant brain tumours develop from the glial tissue, which supports the brain’s nerve cells. 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
It’s also possible to have a malignant tumour that’s a mixture of these types or developed in a different part of the brain.
Who is affected
Brain tumours can affect people of any age, including children, although they tend to be more common in older adults.
Around 5,000 people are diagnosed with a primary malignant brain tumour in the UK each year. Many others are diagnosed with secondary tumours.
The exact cause of primary malignant brain tumours is unknown, although it’s thought that certain genetic conditions and previous radiotherapy treatment to the head may increase the risk of one developing.
Read more about the causes of malignant brain tumours.
How malignant brain tumours are treated
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.
Surgery will usually need to be carried out to remove as much of the tumour as possible. This may be followed by radiotherapy and/or chemotherapy to kill any cancerous cells left behind and reduce the chances of the tumour regrowing.
However, malignant tumours will often eventually return after treatment. If this happens, or if you have a secondary tumour, a cure isn’t usually possible and treatment can instead be used to improve symptoms and prolong life.
Read more about treating malignant brain tumours.
Living with a brain tumour
Living with a brain tumour is not easy. You may feel worried and anxious about what’s going to happen to you and your family. This is perfectly normal.
It can help to seek accurate medical information about your specific tumour and its treatment, make sure you’re closely involved in decisions about your care, and ask your care team about anything you’re not sure about.
Your doctor may be able to 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 that can help, such as The Brain Tumour Charity and Brain Tumour Research.
Read more about living with a brain tumour.
Recovery and outlook
The outcome for malignant primary brain tumours depends on a number of things, such as the type and location of the tumour, your age, and how ill you were when diagnosed.
Overall, around 40% of people live at least a year, about 19% live at least five years, and around 14% live at least 10 years.
If treatment is successful, you may still be left with some persistent problems, such as seizures, walking difficulties, or speech problems. You may need supportive treatment to help you recover from or adapt to these problems.
You’ll also need regular follow-up appointments to check if the tumour has started to come back.
Read more about recovering from treatment for a malignant brain tumour.
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.
Signs of increased pressure on the brain
Common symptoms of increased pressure within the skull include:
- severe, persistent headaches – which are typically worse in the morning or when bending over or coughing
- persistent nausea and vomiting
- vision problems – such as blurred vision, floaters and loss of vision that may come and go
- seizures (fits) – which may affect the whole body or just involve a twitch in one area
Symptoms caused by the position of the tumour
Different areas of the brain control different functions, so the symptoms caused by a brain tumour 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 temporal lobe may cause forgetfulness, language problems (aphasia) and seizures
- the parietal lobe may cause aphasia and numbness or weakness in one side of the body
- the occipital lobe may cause loss of vision on one side
- the cerebellum may cause a loss of co-ordination, 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 (dysarthria) and swallowing (dysphagia)
When to see your GP
It’s important to see a doctor if you develop persistent and worrying symptoms that may be caused by a brain tumour. While it’s unlikely that you have a tumour, it’s best to be sure by getting a proper diagnosis.
If your GP is unable to identify a more likely cause of your symptoms, they may refer you to a neurologist for further assessment and tests, such as a brain scan.
Read more about diagnosing malignant brain tumours.
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. These are known as secondary tumours.
Some primary malignant brain cancers (cancerous tumours that start in the brain) are caused by a previously benign brain tumour becoming cancerous, but usually the exact reason why a primary tumour develops is unknown.
Who’s most at risk?
Some of the things that can increase your risk of brain tumours are outlined below.
Brain tumours affect people of all ages, including children, but the risk tends to increase as you get older. Most tumours affect people over 50 years of age.
People with a family history of brain tumours may be at a slightly increased risk of developing a brain tumour themselves.
If your brain is exposed to radiation during radiotherapy, your risk of developing certain types of brain tumour later on is increased.
Some genetic conditions can increase your risk of a brain tumour, such as:
- neurofibromatosis type 1 or neurofibromatosis type 2
- tuberous sclerosis
- Turcot syndrome
- Li-Fraumeni cancer syndrome
- von Hippel-Lindau syndrome
- Gorlin syndrome
Unlike most brain tumours, tumours associated with these conditions tend to develop in childhood or early adulthood.
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.
However, it’s thought that the amount of RF energy people are exposed to from mobile phones is too low to produce significant tissue heating or an increase in body temperature.
Research is underway to establish whether RF energy has any long-term health effects, but the balance of evidence currently available suggests that it’s unlikely mobile phones cause health problems.
For more information, read about mobile phone safety.
Diagnosing a malignant brain tumour
See your GP if you develop any of the symptoms of a malignant brain tumour, such as a persistent and severe headache.
Your GP will examine you and ask about your symptoms. They may also carry out a simple neurological examination (see below).
If they suspect you may have a tumour, or they are not sure what’s causing your symptoms, you’ll probably be referred to a neurologist (brain and nerve specialist).
Your GP or neurologist may carry out a test of your nervous system, called a neurological examination, to look for problems associated with a brain tumour.
This may involve tests of your:
- hand and limb strength
- reflexes, such as your knee-jerk reflex
- hearing and vision
- skin sensitivity
- balance and co-ordination
- memory and mental agility (using simple questions or arithmetic)
A neurologist may also recommend one or more of the tests mentioned below.
Other tests you may have to help diagnose a brain tumour include:
- a computerised tomography (CT) scan – this produces a detailed picture of your brain using a series of X-rays
- a magnetic resonance imaging (MRI) scan – this produces a detailed picture of your brain using a strong magnetic field and radio waves
- an electroencephalogram (EEG) – where electrodes attached to your scalp record your brain activity to look for any abnormalities
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 (known as a burr hole) is made in the skull and a very fine needle is used to obtain a sample of tumour tissue. You’ll probably need to stay in hospital for a few days afterwards.
Treating a malignant brain tumour
If you have a malignant brain tumour, you’ll usually need surgery to remove as much of it as possible. Radiotherapy and/or chemotherapy may then be used to treat any remaining cancerous tissue.
The aim of this is to remove or destroy as much of the tumour as possible, ideally getting rid of the cancerous cells completely. However, this isn’t always possible and most malignant brain tumours will eventually return after treatment.
If your tumour does return after treatment, or you have a secondary brain tumour (where cancer has spread to your brain from another part of your body), a cure isn’t usually possible. Treatment can instead be used to control your symptoms and prolong life.
Your treatment plan
There are a number of different treatments for malignant brain tumours, and deciding on what you feel is the best treatment can be confusing.
A group of different specialists called a multidisciplinary team (MDT) will be involved in your care and will recommend what they think is the best treatment option for you, 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. For example, you may want to find out the advantages and disadvantages of particular treatments.
The main treatments used are described below.
Surgery will be recommended for most people with a malignant brain tumour. If the size or position of the tumour mean surgery is not possible, one or more of the treatments described below may be recommended instead.
The main operation used to treat people with brain tumours is called a craniotomy. You will be given a general anaesthetic so you are asleep while the procedure is carried out. An area of your scalp will be shaved and a section of the skull is cut out as a flap to reveal the brain and tumour underneath.
The surgeon can then remove as much of the tumour as possible and secure the flap of skull back in place with metal screws.
After surgery, treatment with radiotherapy and/or chemotherapy may be recommended to kill any cancer cells left behind and reduce the risk of the tumour coming back.
Radiotherapy is a treatment where a beam of high-energy radiation is focused on the tumour to kill the cancerous cells. It can be used after surgery or as the main treatment for tumours that are difficult to remove.
Radiotherapy is usually given in several doses (fractions) spread over the course of a week. An entire course of treatment will usually last up to six weeks in total.
In a small number of cases, a similar treatment called proton beam therapy may be recommended. However, this is only suitable in very specific cases and currently you’ll need to be referred for treatment abroad if your doctor thinks it’s appropriate.
Chemotherapy is medication used to kill cancerous cells. It may be used alongside radiotherapy or on its own, either to help kill any cancerous cells left behind after surgery or to help relieve your symptoms when a cure is not possible.
Chemotherapy medication for brain tumours can be given in a number of ways, including as:
- tablets (orally) – temozolomide and procarbazine are given in this way
- injections into a vein (intravenously) – vincristine is given in this way
- small, disc-like implants placed in the brain during surgery – carmustine can be given in this way, but is only recommended if 90% or more of the tumour has been removed
The side effects of chemotherapy largely depend on the specific medication you’re taking. Common general side effects include tiredness, headaches, temporary hair loss and nausea. Read more about the side effects of chemotherapy.
For more information about some of the treatments used, see the guidelines from the National Institute for Health and Care Excellence (NICE) on carmustine implants to treat gliomas and temozolomide for recurrent malignant glioma.
Stereotactic radiosurgery (SRS) is a special type of radiotherapy that’s sometimes used to treat brain tumours that can’t be safely removed with surgery.
During the treatment, several small beams of radiation are used to very accurately deliver a high dose of radiation to the tumour, usually in a single treatment session.
As the radiation beams can be aimed very precisely, a high dose of radiation can be delivered to the tumour with minimal damage to the surrounding healthy cells.
This means you’re less likely to experience many of the usual side effects of radiotherapy. Recovery tends to be much faster and an overnight stay isn’t usually necessary.
However, radiosurgery is currently only available in a few specialised centres across the UK and is only suitable for certain people, based on the characteristics of their tumour.
You may also be given medication to relieve some of the symptoms you may have as a result of your brain tumour.
These may include:
- anticonvulsants to prevent seizures (fits)
- corticosteroids to reduce swelling and pressure in the brain
- painkillers to treat headaches
- anti-emetics to prevent vomiting
Depending on your circumstances, these medications may be given before, after, or instead of surgery.
Choosing 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.
Recovering from a malignant brain tumour
After being treated for a brain tumour, you may need additional care to monitor and treat any further problems.
Malignant brain tumours often grow back after treatment, so regular follow-up appointments will be recommended to look for signs that this may have happened.
These appointments may include a discussion of any worrying new symptoms you experience, a physical examination, and occasionally a brain scan.
You will usually have follow-up appointments at least every few months to begin with, but they may be needed less frequently over time if no problems develop.
Problems caused by a brain tumour don’t always resolve as soon as the tumour is removed or treated. For example, some people have persistent weakness, seizures (fits), difficulty walking and speech problems.
In these cases, you may need extra support to help you overcome or adapt to any problems you have. This may include therapies such as:
- physiotherapy – to help with any movement problems you have
- occupational therapy – to identify any problems you’re having with daily activities and arrange for any equipment or alterations to your home that may help
- speech therapy – to help you with any communication or swallowing problems
Some people may also need to continue taking medication for seizures for a few months or more after their tumour has been treated or removed.
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, see the service guidance for improving outcomes for people with brain and other central nervous system tumours.
Driving and travelling
You may not be allowed to drive for a while after you’ve had a brain tumour. This will depend on things such as the type of brain tumour you had, where it was in the brain, and what symptoms you have.
If you are required to give up your driving licence and notify the DVLA, they will speak to your GP or specialist 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.
You can find out about brain tumours and driving on the Cancer Research UK website.
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 you could have an epileptic fit while in the water.
Sex and pregnancy
It’s safe to have sex after treatment for a brain tumour.
Women may be advised to avoid becoming pregnant for six months or more after treatment. If you’re planning to become pregnant, you should discuss this with your medical team.
Going back to work
You’ll usually tire more easily following treatment for a brain tumour.
You may wish to return to work and normal life as soon as possible, but it’s probably a good idea to return part-time to begin with and only go back full-time when you feel able to.
If you’ve experienced seizures, you shouldn’t work with machinery or at heights.
A brain tumour is often life-changing. You may feel angry, frightened and emotionally drained. If it will help, your doctor or specialist may be able to refer you to a social worker and counsellor for help with the practical and emotional aspects of your diagnosis.
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.
Help you may need might include:
- a care attendant, who can help with housework, dressing and washing, or even just keep you company and give your carer a break
- a “meals on wheels” service
- income support, disability living allowance or attendance allowance
- equipment and adaptations for your home
For more information about what help you might need and how you can access it, see the care and support guide.
Living with a malignant 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’s also common for people to worry about life’s practicalities. For example, you may worry about who will care for your family when you 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’s 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.
You can read more about living with a brain tumour on The Brain Tumour Charity’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.
However, neglecting your own health doesn’t work in the long term. If you’re caring for someone else, it’s important to look after yourself and get as much help as possible. It’s 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 care and support section of this website.
‘I’ve had eight or nine head operations, but it had to be done’
After collapsing at work, Alan Thomas 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’ve 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 The Brain Tumour Charity.
‘I am definitely one of the lucky ones’
April Watkins was diagnosed with a brain tumour soon after starting university. She tells her story.
“In the September of 2009, I went off to university in Plymouth. It should have been the start of an exciting new chapter of my life, but Mum had just been diagnosed with lung cancer.
“In January the following year, I started having really serious headaches and saw various different GPs, who all diagnosed migraine and offered me painkillers. They all thought that it was down to the stress of my first year of university and didn’t think it was anything serious.
“As my headaches became worse, I saw a total of 11 different medical professionals including GPs, A&E doctors and opticians, who diagnosed me with a variety things from migraines to sinus problems. I was even given some glasses.
“Then the headaches became even more unbearable, so I rang Derriford Hospital in Plymouth and begged for help. After being seen by a doctor there, I was given an emergency MRI scan that revealed I had a brain tumour.
“I immediately had an operation to insert a shunt into my brain to drain the fluid which had been causing so much pressure, hence the excruciating headaches, and then underwent a seven-and-a-half hour craniotomy to remove the tumour.
“I was told it was cancerous and that it was a grade IV medulloblastoma. Apparently, if I had waited the two weeks for the MRI at King’s, I would have died.
“To give me every chance of beating the cancer, I immediately underwent six bouts of chemotherapy – one cycle every two weeks if I was well enough, followed by radiotherapy twice a day for five weeks and then a year of maintenance chemo. Having chemo made me feel very anxious and it was tough losing my hair.
“I took the whole of my second university term out, but then returned and was fortunate enough to have a host of people round me who supported me, so that I always had a friend to accompany me on hospital visits.
“In April – while I was going through my chemo and radiotherapy – Mum passed away. It was such an awful time, particularly as I hadn’t got to spend much time with my Mum because of my own problems, and after she passed away my health deteriorated further. There was even a chance the doctors were not going to allow me to go to the funeral, but thankfully I was able to attend
“My sister gave birth to her second child in July. Little Jake brought us all mixed emotions – great joy, but also such sadness that he would never know his Nan.
“A month later, a scan revealed no trace of the tumour and subsequent scans have all been clear.
“I have now completed my degree and I am living and working in Brighton. Since my diagnosis, I have met a lot of people with brain tumours and seen many who have lost their hair and have the “Frankenstein scar” on their head. I have seen those who have suffered horrible side effects from their surgery or radiotherapy – people who have gone blind, lost mobility so that they have to learn to walk again, and those whose personalities have altered almost beyond recognition.
“I am definitely one of the lucky ones, having suffered no lasting side effects, but it just goes to show how important it is to support research into brain tumours to find more effective treatments which hopefully don’t have such an impact on the rest of a patient’s life.”
This case history was provided by Brain Tumour Research.
‘My survival so far should give hope to others’
When David Grant was diagnosed with a malignant brain tumour, he was determined to live long enough to see his young daughter grow up. He tells his story.
“I was in Belfast on August 10th 2005 and was about to chair a meeting when a headache came on. I made a quick trip to Boots and spent 16p on a packet of paracetamol and everything was back to normal.
“Back home in south London, I woke on Sunday morning vomiting, after a string of headaches that week. The next day I wasn’t well enough to go to work so, rather than sit it out, something told me to go to my local medical practice. After explaining my symptoms to a nurse, I was told to try a dairy-free diet for 24 hours and if that didn’t help, then to come back and see the doctor.
“My wife soon took me back to the GP after I began twitching badly and becoming increasingly incoherent. I was swiftly admitted to St Mary’s Hospital in Sidcup, where they did a CT scan and discussed a number of possibilities, including a tumour. My scan was then sent to King’s in London and they confirmed it was a tumour, so I was admitted there to have it removed.
“Having spent my career as a project manager searching for solutions, I was lifted by the news that a solution had been found for the problem. I was transferred to King’s and the operation was scheduled for the next day. Everyone was positive and motivating. My wife and I were warned of the risk of a brain haemorrhage, so she was more than relieved to hear my voice seven hours later.
“But what they had found was malignant, which meant a 12 to 15-month survival. I was told I would need to go on a six-week course of radiotherapy, but even that would only keep the tumour away for 12 months.
“On the way home from the hospital, my wife and I discussed my survival plan. I made two pledges that day: to walk my daughter to her first day at school and to survive well into 2014, so that I might care for my daughter for at least a year longer than my grandfather did for his.
“I started the radiotherapy and chemotherapy programme, but was told not to complete the sixth week of temozolomide [a chemotherapy medication]. Tests had shown my platelet count was dangerously low. I was devastated by the news, as I was still in the “12-month zone”. Three months later, however, I was back on the cycle, only this time on almost double the dosage, for one week a month for six months.
“On July 23rd 2006, I received my last dose of cancer medication and a month later, my end of treatment scan. I speculated on the results – had the treatment worked? Would I still be around to honour the pledges I had made almost a year ago?
“I was taken aback by the reaction of the oncology team at St Thomas’ and remember the words “fab”, “excellent” and “couldn’t be better”. The sheer enthusiasm was striking, as statistics show that the prognosis for the vast majority of people diagnosed with a malignant glioblastoma multiforme is 12 to 18 months, with current available treatment usually just helping to give a few extra weeks of life. I was told there was a likelihood the tumour would return, but hopefully we were looking at a year without symptoms.
“On September 13th 2006, after 277 days off sick, I returned to work at the Royal Bank of Scotland on a gradual return to work programme. I soon turned 50 and was eligible for early retirement and was offered a redundancy package; that, paired with the thoughts of “is this my last Christmas? Birthday? Summer?” etc, made it too good an opportunity to miss. That summer, my wife, daughter and I took a long summer holiday. I returned to an email from an ex-colleague inviting me to help on a project, and I found myself back working that September, in a role I remained in until July 2013.
“Since getting the good news over seven years ago, I’ve had regular six-monthly MRI scans. After my most recent one, my consultant claimed I was part of a small group that was “simply thriving” – my most encouraging words yet.
“My survival so far should give hope to others. With the medical advances that have been made since 2005 and the progress in clinical trials, the statistics are showing glimmers of hope. My motivation throughout it all came from my lovely daughter, who is now 11 years old. As I promised back in 2005, I got to walk her to her first day at school – a moment I will treasure forever. I’m looking forward to the rest of the milestones I get to see her through and sharing the new milestones we set.
“Nevertheless, every time I have another MRI scan, my family and I, like so many thousands of other brain tumour patients across the UK, have to go through the trauma of waiting for the results and wondering if it’s going to be good news or bad. Had I kept still enough? But you can never tell. I always say to myself and others, ‘Just believe in yourself!’.”
This case history was provided by Brain Tumour Research.
‘I hadn’t even suspected that it could have been a brain tumour’
Emily Jones was diagnosed with a brain tumour after experiencing repeated vomiting and dizziness for over a year. She talks about her difficulties getting a diagnosis and the treatment she received.
“I was studying for my Master’s degree in History in the spring of 2011 when I began experiencing episodes of early-morning vomiting. As an otherwise fit and healthy 24-year-old, I initially put this down to food intolerances, hangovers and anxiety. A university friend had suffered from similar problems during our final year, so I assumed my symptoms could have been stress-related.
“Over the summer, I went to see my GP back home in Cheshire, who gave me some anti-sickness medication and told me to come back if the problem persisted.
“On returning to Oxford in the autumn, I began to experience extreme dizziness as well. At its worst, I was waking up in the night with the room spinning. This was diagnosed as labyrinthitis – an inner-ear disorder most commonly seen in older people. The dizziness persisted into the New Year, and then my vision started to become blurry at times, especially in the afternoon. When I reported the latter symptom, I was simply told not to go on the Pill, because I would be at risk of a stroke. I never suffered from painful headaches.
“In Oxford alone, I had seen four different doctors on multiple occasions, all of whom came up with a range of diagnoses and anti-sickness tablets. It almost became normal to run to the bathroom as soon as I woke up.
“By the end of May 2012, a year later, I was nearly at my lowest: exhausted, being sick every morning, dizzy, with no appetite. I was unable to lie flat or turn sideways without feeling incredibly lightheaded; I couldn’t finish a can of Coke without needing to sit down. I asked my GP for a specialist consultation and was referred to a neurologist at last, although as a non-urgent case.
“It wasn’t until a wedding in June that my family became really alarmed at how ill I was. My mother, a nurse, insisted that I go back to my GP to arrange an urgent appointment to see a consultant – privately, if necessary. Even at this point, I was told that my symptoms were nothing serious.
“The consultant neurologist diagnosed my brain tumour within 10 minutes, though she waited for the confirmation from a CT scan before breaking the news. I was admitted to the John Radcliffe Hospital in Oxford that afternoon and prescribed the highest dose of dexamethasone steroids to help reduce the pressure in my brain. Thankfully I was with my mother, and there were plenty of sympathetic staff. I hadn’t even suspected that it could have been a brain tumour because I hadn’t suffered from headaches – so it was a big shock.
“A few days later, I went through a very long operation (posterior fossa craniotomy) to debulk the tumour which removed all of the cancerous cells. Post-surgery, I was told I would feel as if I’d been hit by a bus. Never having been hit by a bus, I had no idea what to expect, so the alternative was “the worst hangover you’ll ever have”. It wasn’t agonising pain, just very uncomfortable, and my energy levels dipped very suddenly.
“It took about six weeks to recover properly. The operation left me with double vision, but happily this corrected itself in three weeks (the given minimum time) whilst I was watching the Olympics.
“We then had to wait for the histology results. The tumour was an ependymoma – of which around 85% are benign – but mine wasn’t. It was cancer. Because of where my tumour was, surrounded by spinal fluid, I needed extensive radiotherapy treatment to my whole head and spine.
“I was initially told in Oxford that this treatment could and most probably would damage my ovaries and my uterus. This was more of a surprise than the brain tumour: I had never desperately wanted children, but I always thought I would have the option.
“My boyfriend was absolutely brilliant throughout, but particularly so at this point. I was offered the option of IVF, which we tried, but my medication had halted my periods and so my only option was to go ahead with the cancer treatment.
“I decided to have my radiotherapy nearer to home at the Clatterbridge Cancer Centre on the Wirral. From the beginning of September, I went to Clatterbridge five days a week, for seven weeks. It was boring and tiring. I was still taking steroids, which made me gain weight and affected my personality. My hair fell out. I kept telling myself how lucky I was to be living in Britain in 2012. Since I was admitted to hospital (as an NHS patient) I have received the most amazing care and support from staff, as well as my friends and family.
“My scan, before Christmas 2012, was clear, as was my scan the following April. There was more cause to celebrate in January when my periods returned.
“We (my partner, family, friends, and I) have had one scare. My scan in September 2013 was reported with concerns. We always try and prepare ourselves for the worst case scenario, but it doesn’t always work. Thankfully it was just scar tissue, but we had a horrible four days thinking it was something much worse.
“The following month my boyfriend and I got engaged on holiday in San Francisco, and I’ve now been back in Oxford working on my PhD for a year. My hair is growing back and I’ve lost all the weight I gained when on the steroids. I feel like a normal 26-year-old most of the time, but I still have a long way to go.”
This case history was provided by Brain Tumour Research.
‘Dad left a lasting impression and many happy memories’
John Pettyfer was just 51 years old when his life was cut short by an aggressive type of brain tumour called a glioblastoma multiforme. His daughter Clare tells his story.
“We first realised Dad was ill on the evening of August 2nd 2010, when he had a series of severe fits. He was taken to The Royal County Hospital in Winchester, where he was treated for an infection for six weeks and was put on anti-seizure drugs and other drugs to control the infection.
“Later, when he appeared to be no better, Dad was sent to Southampton General for a scan, and it was discovered that, in fact, he had a grade IV glioblastoma multiforme.
“Surgeons removed as much of the tumour as possible and Dad started months of radio and chemotherapy. I hated watching Dad suffer in so much pain, but we kept his spirits high. He had been told by his surgeon at the time that he was terminal, but after the operation to remove the tumour he came round, saying he would now start to get better, and we kept the same attitude.
“During his treatment, Dad charmed the hospital staff who treated him on a daily basis over the ensuing months. He astonished them with his bravado and cavalier attitude to it all. He would put them at ease with his anecdotes and stories, refusing to discuss the latest treatment he was on, saying “Let’s talk about horses, not this. Do what you have to do – I have to get back to work. My boys are waiting for me.
“They adored him and, like everyone whose lives he touched, Dad left a lasting impression and many happy memories of many happy times.
“He became ill again in June 2011 and a scan revealed the tumour had returned. When he was told this, he then knew and understood he was going to leave us – it was such a difficult time for my whole family.
“The last few days of his life were a tribute to him. As a friend remarked – “it showed the magnitude of the man – the bravery it took to mask his illness, to still be venturing outside, encouraging and helping the family run his business and overseeing the care of his horses, when he only had days to live.
“My Dad died in the early hours of Monday 25th July 2011. The whole family was aware that an eerie silence had fallen, that there was no dawn chorus, not one cockerel crowed … And when I went out to tend his animals, my Dad’s favourite cockerel was dead, and the single ferret he owned was missing from her cage. We like to think he took them with him.
“Life sometimes makes no sense and most certainly not in this case. My Dad was far too young to go at just 51 years old. But Dad, you were never beaten! We believe you just had somewhere else you needed to be.”
This case history was provided by Brain Tumour Research.
‘Doctors told us that they could only delay his death’
Neville Holt passed away at the age of 74 after being diagnosed with an aggressive type of brain tumour called a gliosarcoma. His son Chris tells his story.
“It was quite apparent that my father wasn’t his normal self and hadn’t been for over a year. He was quite impatient and things just didn’t seem right.
“Six months before going into hospital, Dad couldn’t touch the back of his head and had started to lose some of the sensation in his fingers which, in turn, made it difficult for him to do the buttons up on his shirt, or tie his shoe laces.
“Eventually, the GP booked him to have various checks at the hospital. Suddenly, we were confronted with the reality that Dad had an aggressive brain tumour, which turned out to be a grade IV right posterior parietal gliosarcoma.
“He was given a prognosis of only 12 to 18 months maximum and the doctors told us that they could only delay his death. It was a terrible shock – we really didn’t have any idea that his condition was so serious, but Dad took it quite well, so we tried to keep a positive outlook.
“The day after Dad was diagnosed, he lost the use of one side of his body. Surgery was performed in August 2010 to remove as much of the tumour as possible. The operation went well and Dad seemed to be improving. They even got him out of bed and moving around with the help of a walking frame. It gave us a lot of hope. Dad felt so well that he was planning to take the family away for a weekend together.
“Two weeks later he was transferred to another hospital for a course of radiotherapy, then to a third, which specialised in rehabilitating people with head traumas. We were amazed at the number of people there with brain tumours.
“Tragically, my father never recovered. It was only three or four weeks before he passed away that it really sunk in that Dad was going to die. Just 14 weeks after his diagnosis, Dad died on October 29th 2010. Mum had spent every day of those 14 weeks with Dad in hospital. He was 74 years old. It was very distressing.
“My mother is finding it very difficult without Dad. They used to do everything together. Fortunately, my sister and brother both live very near Mum and, although I live further away, I go home every weekend – so we all do our bit to make sure she is well looked after. But we can’t take the place of Dad.”
This case history was provided by Brain Tumour Research.