Brain Tumour, Malignant (cancerous)


Symptoms of a malignant brain tumour

Causes of a malignant brain tumour

Diagnosing a malignant brain tumour

Treating a malignant brain tumour

Recovering from a malignant brain tumour

Case Study 1 - 'I've had eight or nine head operations but it had to be done'

Case Study 2 - 'I am definitely one of the lucky ones'

Case Study 3 - 'My survival so far should give hope to others'

Case Study 4 - 'I hadn’t even suspected that it could have been a brain tumour'

Case Study 5 - 'Dad left a lasting impression and many happy memories'

Case Study 6 - 'Doctors told us that they could only delay his death'

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.


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.

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

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

Increased pressure on the brain

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

  • epilepsy or fits, which can be either major seizures or twitching in one area of the body
  • severe, persistent headache
  • irritability, drowsiness, apathy or forgetfulness
  • vomiting, which is sometimes sudden and for no apparent reason
  • dizziness 
  • partial loss of vision or hearing
  • hallucinations
  • personality changes, including abnormal and uncharacteristic behaviour

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

Loss of brain function

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

  • the frontal lobe – may cause changes in personality, weakness in one side of the body and loss of smell
  • the parietal lobe – may cause difficulty in speaking, understanding words, writing, reading, co-ordinating certain movements and there may also be numbness in one side of the body
  • the occipital lobe – may cause loss of vision on one side
  • the temporal lobe – may cause fits or blackouts, a sensation of strange smells and problems with speech and memory
  • the cerebellum – may cause a loss of co-ordination, difficulty walking and speaking, flickering of the eyes, vomiting and a stiff neck
  • the brain stem – may cause unsteadiness and difficulty walking, facial weakness, double vision and difficulty speaking and swallowing

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.

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

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

Underlying disease

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

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.


Diagnosis

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

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

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

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

Referral to a specialist

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

  • reflexes, such as your swallow reflex and knee-jerk reflex
  • facial muscles (testing whether you can smile or grimace, for example)
  • hearing and vision
  • limb strength
  • balance and co-ordination
  • skin sensitivity to pinpricks, heat and cold
  • mental agility (simple questions or arithmetic)

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

Tests

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

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.

Treatment

Primary tumours

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

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

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

For more information, go to Cancer Research UK's page on statistics and outlook for brain tumours.

Secondary tumours

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

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

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

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

Your healthcare team

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

Your team may include:

  • a neurosurgeon, who will operate on your brain
  • a neurologist, who will treat illness caused by the tumour and manage your chemotherapy, if necessary
  • an oncologist, who will administer radiotherapy and chemotherapy
  • a specialist nurse, who will give you information and support

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

Choosing a treatment

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

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

Primary tumours

Surgery

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

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

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

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

Chemotherapy and radiotherapy

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

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

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

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

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

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

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

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

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

Read more in the 2001 NICE guidelines on Temozolomide for recurrent malignant glioma.

Radiosurgery

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

  • a higher intensity
  • focused on a smaller area of the brain
  • given in one session (rather than over a period of time)

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

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

Secondary tumours

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

  • corticosteroids, which are tablets to reduce swelling and pressure in the brain
  • chemotherapy and radiotherapy (see above)
  • anticonvulsant medicines, which prevent epileptic fits
  • painkillers to reduce headaches
  • anti-nausea drugs, which can help relieve sickness caused by increased pressure inside the skull

What if I choose not to have treatment?

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

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

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


Recovery

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

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

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

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

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

Getting back to normal

Driving and travelling

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

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

Flying is usually possible from three months after treatment.

Sports and activities

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

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

Sex

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

Going back to work

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

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

Help and support

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

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

  • the type of tumour you had
  • the treatment you had
  • your job

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

Social support

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

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

Care attendants

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

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

Meals on wheels

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

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

Benefits

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

Home adaptations

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

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



Living with a brain tumour

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

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

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

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

  • Seek accurate medical information about the disease and your treatment options.
  • Make sure you are involved in decisions about your care and treatment. This can help to dispel the fear of the unknown and the feeling that you do not have any control of what is happening to you.
  • Take a notepad with you if you find it difficult to remember questions and the answers, and write things down to refer to later. 
  • Set your own limits according to how you feel. Do not push yourself to perform at the level you were before the diagnosis and think you have to carry on as usual. 

Read further information 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.

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

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


Case Study 1 - '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 Brain Tumour UK.


Case Study 2 - '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, and 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.


Case Study 3 - '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 10th August 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 this 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 23rd July 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 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 precious 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 13th September 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 is it going to be good news or bad this time? 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.


Case Study 4 - '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 I 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, if necessary, privately. Even at this point I was told that my symptoms were nothing serious.

"The consultant neurologist diagnosed my brain tumour within ten 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.


Case Study 5 - '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 2nd August 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.


Case Study 6 - '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 the 29th October 2010. Mum had spent every day of those fourteen 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.

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