Tuesday, November 19, 2013

Why are more and more of us getting brain tumours? For Claire, it started with a tingle in her hand. Then came a terrifying diagnosis

Why are more and more of us getting brain tumours? For Claire, it started with a tingle in her hand. Then came a terrifying diagnosis

  • Mother-of-two Claire Craig, 36, from surbiton had tumour on her brain
  • Discovered benign hemangioblastoma after MRI for suspicious headache
  • Since 1970, brain cancer has risen by 23 - 25 per cent in the UK


When mother-of-two Claire Craig noticed a numb, tingling sensation in the fingers of her right hand, she never dreamed it could be something serious.

'We'd just got a puppy who was  nipping a bit, and I assumed he'd caught a nerve in my hand,' says  Claire, 41, an interior designer from Surbiton, Surrey.

'I forgot about it, but then, over the next three months, it got worse. My whole hand was numb. It was like I was wearing a thick ski glove. While driving, I didn't feel I could hold the steering wheel properly.'

Claire's GP suspected carpal tunnel syndrome - when the nerve in the hand becomes compressed - but  tests came back clear, so an MRI scan was ordered.

Claire had a tumour on her brain. She is here with husband Tony and children Jemima, 8 (l) and Matilda, 12
Claire had a tumour on her brain. She is here with husband Tony and children Jemima, 8 (l) and Matilda, 12

In the months before her scan appointment, her symptoms escalated. 

'The numbness had gone right down my leg by now and it felt  like lead - I had to pull it up the stairs,' says Claire, who is married to Anthony, a deputy headteacher, and who has two daughters, Matilda, now 12, and Jemima, eight, plus a stepson, George, 19.

'But I still didn't think it was anything serious as I didn't have any  other symptoms - no headaches  or dizziness.
    'Even after they did the MRI and called me back urgently for another one because they'd found a “spot” on my brain, I remained calm. I don't think I quite took  it in.'

    The morning after her second MRI scan, Claire received a phone call from the hospital. There was a tumour the size of a small aubergine on her brain.

    'Cancer never occurred to me,' she recalls today, four years later. 'I was 36, I had two young children and in the space of a few days my life had changed for ever.'

    Medical advances in recent decades have transformed our knowledge of many cancers. But for brain tumours, which claim around 3,400 lives every year in England and Wales, we are badly lagging behind.

    Cancer never occurred to her. She was just 36
    Cancer never occurred to her. She was just 36
    The symptoms are vague and variable, and little is known about the causes or risk factors.

    Worryingly, no one can fully explain why, unlike most other conditions, the number of cases is rising.

    'The detection rate is getting better, but even given that, there has been a jump in the numbers above what we might expect,'  says Kevin O'Neill, a neurosurgeon at Charing Cross Hospital, London.

    Since 1970, the incidence of brain cancer in the UK has risen by 23 per cent in men and 25 per cent in women, according to  the charity Brain Tumour Research Campaign.
    There's also been a rise in secondary brain tumours, which occur when cells from another cancer - such as a breast cancer - spread to the brain.

    Between 20 and 40 per cent of cancers eventually spread to the brain - most commonly in patients who have had breast, lung, bowel and skin cancer.

    Experts say not enough is being spent on research, meaning prognosis remains poor; sadly,  58 per cent of people diagnosed with brain cancer die within a year, compared with 5 per cent for breast cancer and 7 per cent for prostate cancer. Part of the problem is that brain tumours, by the nature of their location, are hard to reach.

    Indeed, Claire's surgeon told her he would not know for sure what kind of tumour she had until he had begun operating on it.

    'He told me there were two possible types: one was non-recurring, the other terminal,' she says.

    'My husband, Tony, and I dealt with it in very different ways. For me, it could only be the good type of tumour and there was no option of me not coming through this.

    'Tony felt he had to prepare himself for the worst outcome.'

    Claire's tumour was on her brain stem - the region at the back of the brain that connects it to the spinal cord. There was a high risk the operation itself would cause paralysis, but Claire had no choice. Without treatment, she could have been dead within a year.

    'The three weeks before the operation in March 2009 were the worst of my life,' she says. 'We told the girls that Mummy had an egg in her head and had to have it taken out. They were only three and seven at the time, but they've since told me how frightened they were.' Claire's surgeon predicted the operation would take four to five hours - it took nine.

    'Between 20 and 40 per cent of cancers eventually spread to the brain'
    'It was a lot deeper and bigger than they'd thought, so they had to cut through a lot of my nerve tissue,' she says. 'When I woke up, I was paralysed down one side.'

    In the following weeks and months, Claire fought to regain the use of her right-hand side, slowly learning to walk, talk and eat again. After one month, she went home to her family.

    Tests showed that her tumour was a hemangioblastoma - a rare, but benign, type.
    One year after the operation, scans showed the tumour hadn't returned. Two years ago, she was told to go away and live her life as if it had never happened.

    'I was cured, and not many people with brain tumours can say that,' she says. Incredibly, she has suffered few long-term problems, apart from some numbness and weakness.

    'It's mainly affected my small motor skills, so I can't sew a button on very quickly or hold two mugs with one hand, for example. And I can't wear court shoes,  ballet pumps or anything without support because I can't flex  my foot to keep the shoe on,'  she says.
    Claire's outcome is an astonishing one in a field of medicine that is notoriously complex.
    'What causes brain tumours is the $64,000 question,' says neurosurgeon Kevin O'Neill.
    'There is a relative peak in childhood and another in late middle age, but apart from that, we don't know any absolute risk factors.'
    Tests showed that her tumour was a hemangioblastoma - a rare, but benign, type
    Tests showed that her tumour was a hemangioblastoma - a rare, but benign, type
    espite fears that mobile phones cause brain tumours, the evidence does not suggest any link.

    There's a risk of misdiagnosis because the condition is rare, and its symptoms - such as headache - are similar to many other, less serious illnesses. 'A headache is very unlikely to be due to a brain tumour, but if it is persistent and unrelenting, alters when you change position, and is associated with nausea, visual disturbance, numbness and weakness, it's worth having it checked.'
    Brain tumours cannot be treated with chemotherapy because of the blood-brain barrier - a natural protective blockade that stops drugs from getting into the brain from the bloodstream.

    Surgery is often the first option, but this carries risks.

    'Because of where they are, brain tumours are hard to remove without injuring the patient,' says Mr O'Neill. 'Also peculiar to them is that they can be made up of different groups of cells which behave in different ways, making them difficult to see and take out.

    'So whatever treatment you apply, some tumour cells may be left behind.

    'But options are improving - we are starting to use 3D technology to create a picture of the tumour so that during surgery we can see which cells are tumour and which are normal brain.'

    Certainly, experts hope that in the future we will hear more success stories such as Claire's.

    She says it took several months after her operation to start to make sense of what happened. 

    'I suppose I used to think I was invincible. This made me realise we're not in charge,' she says.

    For more information,  visit wayahead-btrc.org

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