Sixties children are developing a rare and deadly cancer - a legacy of asbestos in schools and homes. And as this sufferer reveals, they're being denied the one drug that could save them:
The consultant and I were alone together in a tiny room on the umpteenth floor of a large London NHS hospital. He was looking at the results of a recently completed scan on my lungs. It was late summer 2005, a day of unbroken sun, and I'd ridden to the hospital on my mountain bike, revelling in the freedom.
Now we were in this broom cupboard of an office as a result of my noticing a cough and a strange sensation in my lung that hadn't gone away.
My GP had initially refused to refer me for an X-ray, but eventually relented. The X-ray and consequent CAT scan had quickly established that something in the lung was awry, but nothing could have prepared me for what this consultant was about to say.
'What you've got is either a benign asbestos-related lung condition or mesothelioma,' he said.
Asbestos? I'd never worked in industry, never knowingly been near building materials. Mesothelioma? What was that? I couldn't even pronounce it.
The consultant continued: 'A biopsy will decide it. If it's a benign asbestosrelated condition then you could reasonably expect to live for years, if not decades. If it's mesothelioma — and that's what I think it is - then 12, maybe 18 months. You're young - early 50s - so maybe 18.'
I went cold, said nothing. He gestured with his hand. 'There are treatments, but none I think worth having. The surgery is too brutal and of no help. You'd end up a wreck: believe me, I've seen the results.
'If I were you, I'd go home, open a bottle of claret and enjoy what time is left.'
I looked into his eyes. 'Is that your opinion or is it fact?' 'It's my opinion,' he answered. 'Thanks, but I'll stick to fact.' With that, my personal quest for a mesothelioma treatment - and a future worth having - commenced.
It would take my wife and me to America, France and Australia before my treatment commenced, five months later. First I had to defeat the feeling of being a dead man walking. That could come only through the birth of hope.
Things didn't start too well in that department. I underwent a biopsy involving a 'video thoroscopic viewing'.
This confirmed the mesothelioma, yet offered nothing else but bad-tempered nurses and a shrug of the shoulders from the consultant surgeon who delivered the news to my bedside.
When a third London consultant recommended I take part in a formal mesothelioma trial at Guy's Hospital in London, explaining that this trial offered hope of 'a cure', I was hooked, and booked, within the week.
But at the first interview there I was told there was 'no cure' and that the trial was to establish the worth of radical surgery called Extra Pleural Pneumonectomy (in which the lung, the lung lining and part or all of the diaphragm are typically removed).
The surgery is risky - it kills one or two people in every 20 - but only half the patients in the trial would be offered it in combination with radiotherapy and chemotherapy. The others would have just radiotherapy and chemotherapy.
Like everybody else in the trial I would be a guinea pig, with no control over my treatment which would be decided by computer lottery. I asked what was in it for the guinea pig. 'Posterity,' was the candid reply.
Posterity? I had a wife who'd just started a high-pressure job and two teenage children, sitting GCSEs and A-levels that academic year, to consider. I politely declined the trial.
Mesothelioma is a devastating cancer of the lung lining caused by exposure to asbestos. The cancer is initially highly localised within the body, although very aggressive. It typically spreads from one lung along the lung lining to the diaphragm and into the chest wall.
Its victims die from the overwhelming effects of the cancer as it produces chemicals that gradually run the body down and destroy its resistance. It rarely spreads beyond the side of the body it is initially found within.
It is a separate cancer from that of the lung also caused by asbestos, which accounts for about 5 per cent of all lung cancer cases in the UK each year.
Asbestos-triggered lung cancer typically develops in the bronchial passages - as does smoking-related cancer - and its development is virtually indistinguishable from the latter.
As with most cancers, there is no established pattern to the development of the disease. Some people work with asbestos for their entire adult life and do not develop mesothelioma; others have a very limited exposure, perhaps days or hours, and become victims.
Some doctors think a genetic disposition may account for this, but this is unproven. However, it is known that the gestation period of this cancer is typically 30 to 40 years.
For decades, mesothelioma was seen as the occupational disease of people who work in heavy industry or the building trade. That is rapidly changing.
As Dr David Landau, who runs a mesothelioma clinic at St Thomas's Hospital in London, observes: 'The typical patient is male and in his 60s.
Most are manual workers or engineers...but there is an increasing number of patients in their 40s or 50s have had no obvious asbestos exposure. This Baby Boomer group is definitely expanding.'
There is a clear link between the widespread proliferation of asbestos in office, school and domestic building programmes in the late 1960s and the current rise in cases.
The Baby Boomers who are only now being diagnosed could well have had their fatal contact with asbestos 30 to 40 years ago. The only likely explanation for my exposure was the new wing at my school. The asbestos was later removed, but by then I was long gone.
Dr Landau believes that the incidence, which has doubled from 1,000 to 2,000 new cases in the past decade, will rise rapidly over the next ten years.
Cancer Research UK predicts that 200,000 people could contract asbestosrelated cancers from exposure in the 1960s and 1970s; other experts believe 90,000 could die from mesothelioma.
The U.S. has already experienced the onset of a mesothelioma epidemic and a similar pattern has emerged in Australia which, along with South Africa, was one of the major asbestos exporting countries until relatively recently.
In Australia, there is a legally established link between asbestos and mesothelioma, and major-league legal suits against the manufacturers and users of the material are ongoing.
In the UK, much of the health service is only just waking up to this potential epidemic, so treatment for this disease is currently a low priority in the NHS.
Because mesothelioma is initially highly localised, if diagnosed early enough, it lends itself to removal through radical surgery. This option, however, is controversial and some experts in the UK remain sceptical about both its efficacy and its impact upon a patient's quality of life.
I sought the advice of experts in five other countries to help me decide on this step in my treatment. One such expert, Professor Thierry Le Chevalier of the renowned Institut Gustave- Roussy in Paris, gave me reason to consider the treatment, before wryly commenting about my situation in the UK.
'The English tend to be pessimists. They will concentrate on the 95 per cent of people who don't make it through. We Normans are optimists. We like to think about the 5 per cent who do.'
But one area upon which there is agreement among medics is the need for the 'gold-standard' drug combination - Pemetrexed and Cisplatin - to be a routine part of the chemotherapy treatment of mesothelioma within the NHS.
As I know to my cost, this level of treatment has been withdrawn over the past year through the good offices of the National Institute of Clinical Excellence (NICE). This leaves NHS mesothelioma patients no option but to undergo chemotherapy using the combination of Gemcitabine and Cisplatin.
The decision has been met with dismay and condemnation from patients and the medical profession, and the reason is not hard to find.
The response rate for Gemcitabine is around 20per cent; for Pemetrexed, it is around 40 per cent. Last year NICE declined to fund this treatment, claiming it was 'not cost-effective' by their own fairly arbitrarily imposed criteria.
As Dr Jeremy Steele, consultant oncologist at the Mesothelioma Research Fund at St Bartholomew's Hospital in London, explains: 'What is so galling is that Pemetrexed is trialled and licensed for use in the UK and is routinely used in most EU countries for this condition. We are the exception.'
Dr Landau believes mesothelioma could be among the top ten UK cancers in the next decade. But aside from the explosion of cases, there is another urgent reason for research to be funded.
Dr Steele thinks that the possible genetic underpinning of this cancer is a prime candidate for well-funded research that, if successful, could benefit victims of other more common cancers such as those of the breast, bowel and prostate. That alone should persuade the Government to encourage research into mesothelioma.
The death toll could be even higher. 'The predictions of the past decade have underestimated the number of cases,' claims Dr Landau. 'We are seeing younger patients with less asbestos exposure. I think there is likely to be a significant increase in the number of cases over the next two decades.'
More alarming figures have recently been cited by Professor Julian Peto, Cancer Research UK Chair of Epidemiology at London School of Hygiene and Tropical Medicine. He estimates that '90,000 people could die from mesothelioma - it has already killed twice as many people as cervical cancer'.
Yet in all this uncertainty and gloom, there is always hope. Dr Landau says: 'I think the greatest optimism comes from new drugs; targeted biological agents.
'In the past two years, kidney cancer has emerged from being one of the tumours that never responded to one that we now have three or four excellent treatments for, and we expect more. There is good reason to hope the same will happen with mesothelioma.'
In my own case, with one lung still sound, five months after my diagnosis and exhaustive research, I opted for the controversial 'tri-modal' treatment. This combined the radical surgery with intensive radiotherapy (six to seven weeks of it) and six cycles of a very punishing form of chemotherapy.
This was to be undergone at Bart's in London - at that time one of the few NHS hospitals in the country to offer the 'gold-standard' drug Pemetrexed as part of its chemotherapy programme.
During my visits to the mesothelioma clinic there, I realised that mesothelioma victims from all over the country were coming to Bart's in their desperation to get chemotherapy with Pemetrexed.
As it happens, I had to have the surgery privately (via health insurance) to avoid my operation date being 'bounced' - the long delay in finding the right treatment might have severely jeopardised my chances of avoiding a spread of the disease to the chest wall. That would have rendered me inoperable.
After surgery I was to move on to radiotherapy and, unusually, chemotherapy as the last part of my radical treatment. Within a fortnight of my leaving hospital to recuperate at home, Bart's NHS Trust had pulled the plug on Pemetrexed.
With nowhere else to go, I had radiotherapy and chemotherapy through private health channels as a back-up to the surgery. But then, I was lucky: I had a lung left to breathe with.
During my recovery period in hospital, I received first-rate nursing. As I improved to the point where I was out of bed and going for little walks, one nurse who had been particularly encouraging asked me what operation I'd had. I told her the disease and what the surgeon had been obliged to remove.
She looked at me in wonder and surprise, then leaned forward to ask me a question. Her voice quivered with concern.
'Did they take out both lungs?' I took a deep breath. 'No,' I said.
She looked relieved, patted my shoulder, gave me a wink and said: 'That's good, then.'
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Labels: Mesothelioma Cancer
