Brain Tumour, Malignant (cancerous)

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.

• 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. 

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'

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.