By Denise Winterman
BBC News Magazine
Not everyone with lung cancer is - or has been - a smoker. But some sufferers say people assume they have been - and warn that the stigma could be costing lives.
Wednesday is No Smoking Day, which puts lung cancer back on the national agenda - briefly.
Viewed by most as the "smokers' disease" it is rarely in the headlines and definitely not a cause celebre like breast cancer, despite being the biggest cancer killer in the UK. To put it bluntly, it has a serious image problem.
One in 10 people who get it have never actually been smokers themselves or lived with smokers, according to Cancer Research UK. Dana Reeve, the wife of Superman actor Christopher Reeve, died of the illness on Tuesday despite being a non-smoker her whole life.
But people's assumptions that sufferers have been smokers has far reaching consequences, from the way sufferers are treated to funding for research.
On a personal level lung cancer patients are viewed as "only having themselves to blame" for getting the disease. And despite claiming the lives of more than 38,000 people every year - more than leukaemia, breast and prostate cancer combined - it receives just 4% of the national cancer research budget.
"You are judged in a way that you never would be if you had breast cancer," says 47-year-old Theresa Fletcher, a life-long non-smoker and lung cancer patient.
"The first thing I am ever asked when I tell people about my illness is if I smoke or ever have done. The inference is that they think people with the disease must have brought it on themselves. Fighting lung cancer is tough enough without having to deal with other people's prejudice about it."
Theresa Fletcher: 'Fighting cancer is tough enough without prejudice'
And the assumptions don't just start outside the hospital, they are also made by other cancer patients.
"I have spent a lot of time in hospital waiting rooms over the last few years and other people always ask me if I have breast cancer," says Theresa.
"They just assume if you are a woman you won't have lung cancer, as it is seen as an old man's disease. But it's not, anyone can get it and not necessarily through smoking. People need to be educated so they don't make assumptions and realise they are at risk too."
The married mother of five was diagnosed in 2003. She had found a small lump on her neck but had none of the symptom commonly associated with the illness, such as coughing and breathlessness.
A biopsy confirmed it was lung cancer, leaving her devastated. Things got worse when in July 2004, a scan revealed the tumour had spread to her brain, but after treatment she is now in remission.
The reaction to Theresa's lung cancer is not unusual and the stigma that it is always caused by smoking is costing lives, says the Roy Castle Lung Cancer Foundation (RCLCF).
Even if everyone gave up cigarettes today lung cancer would still exist as it is not exclusively caused by tobacco and its incubation period can be decades, says the charity's chief executive Mike Unger.
"The stigma surrounding lung cancer and smoking is doing huge damage and has serious consequence when it come to funding, research and saving people's lives," he says.
"It receives just 4% of the total funding for cancer research in spite of killing 22% of cancer patients. When it comes to campaigning, we are the only lung cancer charity in the UK and we are always struggling to raise money. This is all costing lives. "
According to RCLCF, for every mortality from leukaemia £9,008 has been spent on the patient, for breast cancer it is £3,000, but for lung cancer it is just £117.
It has one of the lowest survival rates for any cancer because it is often not detected and treated early enough, but no national screening programme is planned while £72m is being spent on one for breast cancer. The government says it is following a trial of lung cancer screening in the US to see if it would actually save lives.
Theresa says while the media reports the debate about breast cancer patients wanting the drug Herceptin, there is no similar awareness of the access problems of the lung cancer drug she has been using, Tarceva. Some primary care trusts are refusing to approve the £1,500-a-month drug, though that is not widely reported.
Dana Reeve: Never a smoker
The high profile of other cancers should not be changed, she says, but lung cancer should stand alongside them, both in terms of campaigning and funding. Only then will the stigma be tackled.
"No cancer is easy to deal with, whatever type you are unlucky enough to get, and surviving it is an achievement," she says.
"I really believe it helps to maintain a positive attitude throughout your treatment, but that is hard when you know people think your illness is your own fault. I used to get angry, but now I don't waste the energy."
My mum had secondary cancer of the lungs and liver. The initial diagnosis was bowel cancer. It is very true that these less talked about cancers are not as 'trendy' as say breast cancer. There is certainly more of a stigma attached to lung and bowel cancer, and as such funding into research is much much lower as discussed in the article. People do automatically lump all lung cancer suffers together as 'smokers who brought it on themselves' which is hugely unfair to people like my mum who are not and have not been smokers.
Nic Allen-Smith, Honiton, Devon
my mother-in-law died last year of lung cancer and like Dana Reeve had been a non-smoker the whole of her life. She had a persistent cough for a month which turned out to be a symptom of lung cancer. People need to be aware of the possible symptoms of the disease and be more sympathetic and open-minded about the possible reasons why people might get the disease.
Katy Weiss, London, UK
The article seems to suggest that sympathy is due to those who have never smoked and get lung cancer, but in the case of those people who have smoked and possibly as a result have lung cancer they do not deserve any sympathy and money should not be spent trying to save their lives. I find this line of argument very unjust. It is not fair that people are treated differently depending on what kind of life threatening disease they have. We live in a society where many of the things we do may cause us harm, smoking ,drinking, eating fatty food, not taking enough exercise, and not eating enough vegetables. Some of us get away with this unhealthy life and others are less lucky. There are many studies which show that people who do certain things are more or less likely to get certain illness. Would it be acceptable to ask a breast cancer sufferer if they had breast fed their children? A lot of illness is due to lifestyle choices that does not make the illness any less devastating for the sufferer or their family. The stigma attached to lung cancer is bad but this is bad for everyone not just those who have never smoked.
It is disgusting the way people are treated over lung cancer. Smokers or non-smokers.
Smokers pay huge ammounts of money in duty to the government. Surely some of this could be spent on research and drugs.
£117 for each lung cancer patient is disgusting. I have paid alot more for a vets bill for a cat!!!
The government should be ashamed.
Ian, Bexhill on Sea
I don't think people are expressing prejudice when they ask if you are a smoker, they are resolving their fears - people like to have a sense that there is a cause for something...look at news reports when someone dies, there is almost always a codicile to explain they had had X for many years etc
stephen thompson, chepstow
When you can say 90% of the people who have lung cancer were smokers, you cannot blame peoples impressions on a 'bad image'.
Perhaps it is not correct for me to infere that there is a truth behind the way people, unfortunately, get treated.
I would also say, why start to try and treat lung cancer when a prevention is so readily available?
Of course, there will always be lung cancer patients who haven't smoked but factor in second hand smoke and the number caused by smoking may increase.
This argument concerns perceptions of non smokers with lung cancer. What about all the tax paying smokers with lung cancer- why should they suffer when in their smoking lifetimes they will have contributed direct taxes on their habit? And if it does come down to cost and personal responsibility, lets ground the coast guard next time Cowes is on.
I can't support research into lung cancer when 9 out of 10 sufferers are smokers. If the NHS refused treatment for smokers then I would support it.
The government should campaign to make the public aware that lung cancer does affect non-smokers, in order to highlight symptoms and erode the discrimination of the disease. Past and current agressive anti smoking campaigns have in fact sent the message to all of us that only smokers get lung cancer.
Roy Castle and Dana Reeves clearly show us this is not the case.
Nina Harris, Hertfordshire, England
I have always felt that the premature death of Roy Castle from lung cancer should have been a turning point in our perception of this disease. Roy was incredibly fit (witness all his - successful - record breaking attempts needing stamina), had never smoked in his life and yet died (fighting, of course) of "the smokers' disease"
True, he spent a lot of time giving after dinner speeches but that only goes to underline the dangers of passive smoking - something which can be difficult to avoid.
Sadly Roy's death didn't create the necessary attention for lung cancer and passive smoking that it might have done. Nevertheless I cannot understand the methods of spending by Cancer Research and other such bodies when they more or less ignore the big killers - breast cancer is a problem, but one much more easily handled these days with a much higher rate of survival than in the past. Lung cancer is more difficult: fund the research and bring the success rate towards that of breast and prostate cancer...
Timothy Bolton, Oirsbeek, The Netherlands
My late mother-in-law, some years ago, was diagnosed with lung cancer at a Glasgow hospital. She was asked how many cigarettes she smoked. She said she didn't smoke. She was asked how many cigarettes she used to smoke. She replied that she had never smoked. As lung cancer is associated with smoking and she had never smoked, it was decided that the medical team would investigate further, and it was discovered that she had pneumonia, not lung cancer. I often wonder what would have happened if she had been a smoker. Also the distress this caused to her was awful.
Janet Lindsay, London
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