It started with a trip to the physio. Clair Kennedy, a mother of three from Kent, then aged 41, had been suffering persistent back pain. After a series of phone appointments with her GP she was referred to a physiotherapist but, 18 months later, it wasn’t getting better – in fact, the exercises she was given were making it worse.
“I did ask, could it be cancer?” she says. “I was told no, we don’t see cancer in non-smokers of your age.” Then Kennedy caught Covid last February, and started to have trouble breathing. Her GP sent her for a chest and back X-ray, which revealed she had broken her back in three places. Alarm bells rang and an emergency CT scan confirmed she had Stage 4 lung cancer that had spread to her bones. She was 43.
“My reaction was, ‘I’m going to die’,” says Kennedy. “The most shocking thing was being told it was Stage 4. I won’t go into remission. This is my life now.”
Stage 4 lung cancer is incurable and although Kennedy has not been given a prognosis, she has been told that “targeted treatment will hopefully give me a good few years of a normal-ish life”.
Unfortunately, Kennedy is one of a growing contingent of “never-smokers” with lung cancer. (A never-smoker is usually defined as someone who has smoked fewer than 100 cigarettes.) “People automatically say, ‘I didn’t know you were a smoker.’ Then I have to explain: I’m just unlucky,” says Kennedy. “There is still a stigma attached to it.”
According to Cancer Research, while overall lung cancer incidence has decreased by 9 per cent in the UK since the early 1990s, cases in women have risen by a third (32 per cent). “Lung cancer is one of the most common cancers in the UK, so 20 per cent of that is still a huge problem,” says Prof Sanjay Popat, a consultant oncologist at The Royal Marsden Hospital. “We see more lung cancer in people who have never smoked than we see pancreatic cancers.” (The risk of pancreatic cancer is about twice as high among smokers compared to those who have never smoked.)
Although tobacco use is still the most significant risk factor (linked to 72 per cent of UK lung cancer cases), according to the World Health Organisation, 25 per cent of lung cancer cases globally occur in never-smokers. Many of these patients are women aged 50 and under, and they are often diagnosed at Stage 4, when the cancer has already spread and cannot be cured.
“We do see a lot more women with this type of lung cancer than we do men, and we’re not sure why,” says Popat. “Although, one thing we are seeing is an association with air pollution.”
A recent study led by Cancer Research-funded scientists at University College London and the Francis Crick Institute showed for the first time that air pollution can cause cancer in non-smokers. Although tobacco use is still the most significant risk factor.
Alix Burnard, from Berkshire, was 28 and also a never-smoker when she was diagnosed with Stage 4 lung cancer. “It started in March 2021 with a cough, and a month later, I had painful, swollen lymph nodes in my neck,” she says.
“That’s when I contacted my doctor. After a few rounds of antibiotics, I wasn’t getting any better, so I had an X-ray. But my cancer didn’t look like cancer. It wasn’t until the end of May when I was so breathless I couldn’t talk and had lost 10kg that I was sent to hospital and diagnosed.”
“My old life stopped at cancer, in terms of my career, my health and my hobbies,” she says. “It feels like there’s an element of unfairness; I’ve always tried to live well. I had my whole life ahead of me and cancer has changed all that. I lost my health and a lot of my identity.”
After her diagnosis, she was assigned a Macmillan cancer nurse specialist who is her first point of contact for advice on treatment, scans and side effects, which Burnard describes as “incredibly helpful”. She is no longer able to work, so also uses the Macmillan helpline for financial advice.
There is some positive news for Kennedy and Burnard. Both have ALK+ non-small cell lung cancer, which is only the case for 4 to 5 per cent of patients, but is more common in women and those under 50 years of age.
“ALK+” means there is a genetic mutation in the anaplastic lymphoma kinase gene. This is an acquired condition, but experts are not yet clear on what causes it – what they do know, however, is that a new class of drugs makes it easier to treat.
“Sixty-plus per cent of patients that have never smoked will have a druggable genetic abnormality,” says Popat. “The average survival of lung cancer with chemotherapy alone used to be about a year. But if you have ALK+ lung cancer, we give you an ALK inhibitor tablet and average survival is a median of around five years, which means 50 per cent of the population you’re treating are living longer than five years.”
Kennedy takes Brigatinib (two tablets daily and has fewer invasive side effects than conventional chemotherapy). But it has a time limit. “Eventually the cancer will get smart and run wild again,” she says. “But we don’t know when that will be.”
Burnard is also on an ALK+ therapy and is learning to cope with uncertainty. “I can’t plan too far ahead. I just take it day by day, and find as many positives as I can.”
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