‘Don’t go home. Order a taxi, go to A&E and have a chest x-ray. I don’t think this is asthma-related. Something’s not right here.” Her GP’s words struck fear into Jenny Abbott.
It hadn’t started out that way. A few weeks earlier, before Christmas 2017, she got a bad cold and a cough. An out-of-hours GP thought her longstanding viral-induced asthma was playing up and prescribed her steroids. A week later, her own family doctor took the same view. It was a reassuringly familiar diagnosis. But it was wrong. Abbott was surprised when her usual run round the park near her north London home left her breathless. “I just thought I was tired. But the next day I noticed that I was becoming breathless going up the stairs. And the day after that, I had to read something out at work, and even doing that made me breathless,” she recalls. Those symptoms triggered her GP’s plea to go to A&E.
The x-ray there revealed fluid on her right lung. After a CT scan, staff told Abbott there were three possibilities: cancer, an infection or a blood clot. “When they called me into a side office and introduced me to a lung nurse, I knew it wasn’t going to be good,” says Abbott, a former BBC producer turned trainee psychoanalyst. She was 54 at the time.
The doctor told her that she had lung cancer, and that it was not curable. “I was just totally shocked. That was my first thought: this can’t be happening. I locked myself in the bathroom, and cried and cried.” Her diagnosis left her reeling. “I had never smoked, because cigarettes made me feel sick. I was fit. I was a runner.”
Lung cancer is indelibly associated in the public mind with cigarettes, and with good reason: about 86% of those who get it are smokers or ex-smokers. But Abbott is among the growing number of women who have never smoked but are nevertheless being diagnosed with the disease while they are still “young” in medical terms – that is, under 55. Doctors who specialise in the condition are now seeing so many people who have never smoked that they have coined an acronym: LCINs – lung cancer in never smokers. They are the other 14%. Their numbers are on the rise, though experts cannot fully explain why.
The figures are startling. In an article published in the Journal of the Royal Society of Medicine, Prof Mick Peake – the clinical director of the centre for cancer outcomes at University College London hospital (UCLH) – estimates that nearly 6,000 people who have never smoked die of lung cancer every year. That is more than the number of people who die of cervical cancer (900), lymphoma (5,200), leukaemia (4,500) and ovarian cancer (4,200): “If considered as a separate entity, LCIN is the eighth most common cause of cancer-related death in the UK, and the seventh most prevalent cancer in the world,” he writes.
While about 10% of men in Britain diagnosed with lung cancer are non-smokers, the percentage of women is higher: 15-20%. The decline of cigarette consumption over the past 15 years means that the proportion of people with the disease who are LCINs is growing. In addition, the absolute numbers and rates of LCINs are going up. Abbott loathes the stigma that non-smokers face when they get “the smoker’s disease”; every time she tells someone about her diagnosis, she feels obliged to add: “I’ve never smoked.”
“Like all people in my situation, you think: why? I ask that question every single day. It’s the first thing I think about in the morning, the last thing I think about at night and the thing I think about when I wake up in the night. It’s the tune that’s always playing in my head.”
The media’s focus on breast, cervical and prostate cancer obscures the fact that lung cancer is Britain’s biggest cancer killer, claiming about 35,600 lives a year; more than from breast, prostate, liver and bladder cancer combined. Since the late 1970s, the rate of lung cancer diagnosis has fallen by 14%. Yet while it has fallen by 44% in men in that time, it has risen by 69% in women because women began giving up smoking years later. “When I began treating lung cancer in the early 1980s, I saw four men for every woman. It was almost a male disease back then. Now it’s almost one-to-one,” says Peake. Of the 46,388 diagnoses in 2015, about 53% were men and 47% were women. Of the total, about one in eight had never smoked.
Ruth Strauss, the wife of ex-England cricket captain Andrew Strauss, and a non-smoker, died of the disease just after Christmas last year at the age of 46, barely a year after her diagnosis. Her husband recently said: “There is an assumption there that if you get lung cancer, you were a smoker. Ruth never smoked a cigarette in her life.”
The disease also claimed the life of Siân Busby, the novelist and wife of Robert Peston, the political editor of ITV News. She was 51 when she died in September 2012. Peston said that his wife was “probably the only person I know who has never smoked a cigarette” and described lung cancer as “a monster laying waste to our family”.
There is no consensus among experts about why lung cancer is affecting more and more non-smokers. Peake lists four main known causes: passive smoking; occupational factors, such as exposure to asbestos; exposure to radon gas; and a history of serious breathing conditions. Being brought up in a home where one or both parents smoked increases risk, as does having a close relative with the disease. While asbestos is known to cause certain cancers, including mesothelioma, different work patterns between men and women mean that is likely to have caused few cases of lung cancer in women. One study has estimated that radon leads to 1,500 people a year developing the disease. There are also clear statistical links between tuberculosis and pneumonia and lung cancer risk.
But there are strong suspicions, too, that air pollution could be a factor. Outdoor pollution is under scrutiny, although Peake says open fires and even cooking Sunday roasts may increase risk (while stressing that neither has been proven). It is noteworthy, though, that more than half of lung cancers in women in China occur in non-smokers. “That is probably explained by indoor air pollution from indoor cooking of oils at high temperature – wok cooking – in an unventilated area,” he says. Some LCIN women believe that chemicals in perfume, makeup, aerosols or cleaning products may be to blame, but Peake is adamant that there is no evidence to incriminate any of them.
Many LCINs, including Abbott, have a form of the disease called adenocarcinoma, which is much less strongly associated with smoking than the other types. Though experts are baffled as to why, it is increasing as a proportion of all lung cancers, and is more common in women than men. The result: female LCINs are a higher proportion of the cases lung cancer specialists are seeing.
Dr Neal Navani, a specialist in respiratory conditions at UCLH, says he often has to tell previously healthy non-smoking women under 55 that they have been diagnosed with one of the most lethal forms of cancer at stage four – when it is incurable. “It’s difficult to describe the emotion they feel. Everything just drains from their face,” he says. “Today, I told two women under the age of 55 that they have advanced lung cancer. One was under 50 and had never smoked. She’d had a hoarse voice, but none of the other symptoms, such as a cough, chest pain or breathlessness. When I went over the scan with her, she reacted with total incomprehension and said: ‘Why me?’”
Navani says that GPs typically see fewer than two cases of lung cancer a year, even among smokers – so it’s unsurprising that it’s often at first mistaken for something else. In April last year, Debbie Platts was preparing to undergo IVF when she was told she had stage-four lung cancer at the age of 43. The NHS nurse – who had also never smoked – is furious that several GPs over the course of eight weeks all mistook her searing back pain for a muscle problem and told her to take painkillers. Like Abbott, she was only diagnosed with lung cancer in A&E. “Sick, fearful and devastated,” she then had to tell her three daughters, who were 23, 21 and 16 at the time. “I was so scared, and still am, at the prospect that they could, or will, lose their mum,” she says. “I’ve brought the girls up on my own, so who will now protect them?”
The disease is often asymptomatic until it has spread, explaining why, among those who don’t smoke, it is almost always diagnosed at a stage when the patient cannot be cured. Peake says: “If you’re a 35-year-old woman who has never smoked coming in with a cough, most GPs would put lung cancer at 155th on their list of likely causes.”
Dr Claire Pearson, a GP, knows all about that. The pain she began experiencing in her buttocks last August was initially thought to be tendinitis. In fact, the 55-year-old – who had never smoked – had stage-four lung cancer that had already spread to her pelvis and liver. “My world fell apart at that moment. I went from having a normal evening surgery on the Tuesday after the first scan to being told on Friday afternoon that I was terminally ill with what I knew to be a very nasty cancer, with very poor survival statistics,” says Pearson, who has four children. “In nearly 30 years as a GP, I’ve looked after lung cancer patients, but never seen anyone who wasn’t a smoker or ex-smoker.”
Navani says there is a “nihilism” about lung cancer among people with the condition and health professionals, reflecting the belief that – because there are so few treatments that significantly extend life – a diagnosis is essentially a death sentence. But the outlook is starting to improve. One- and five-year survival rates have got better over the past decade as more patients have undergone surgery, although internationally the UK still performs badly in that respect.
Crucially, new drugs are coming into use, and they are more often effective in non-smokers. There is particular optimism around a class of drugs called tyrosine-kinase inhibitors (TKIs), which stop the cancerous cells from spreading. Pearson’s TKI has extended her prognosis from an initial six months to at least 18 months. Platts’ tumours reduced in size after just 10 weeks of taking the anticancer drug gefitnib; since they became resistant to it, she is now having chemotherapy.
Abbott had some success on a drug called afatinib last year and has been on a second, osimertinib, since October. She is “lucky” that the mutations in her cancer mean different drugs can be deployed. But, as she points out, “while these drugs can dramatically extend someone’s life, they don’t last for ever because the cancer develops resistance”.
Acutely aware of her own mortality, she has two main wishes. First, to stay alive for as long as possible, to watch and guide her children as they grow. And second? “All lung cancer patients hope that researchers will come up with a drug that will turn the disease into a chronic illness – something you can live with for a long time, in the same way that Aids has become an illness that people on drugs can have a normal life expectancy with.” Now it’s over to medical science.
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