living with lung cancer: 'society and the health-care system are judgmental'

when bev moir was diagnosed with stage 4 lung cancer, almost everyone in her work network asked her the same question. it’s the question that’s hard to hear and makes her gnash her teeth: do you smoke?

“that perception and that stigma is such a black cloud over lung cancer. and i have never smoked,” says bev, who had worked in health care and then became a wealth advisor in toronto.

“i was athletic. i’ve run half-marathons and marathons, played a lot of basketball and tennis and golf. so smoking was the last thing that i really wanted to do. and society and the health-care system are judgmental,” she says, noting the resources and investment in lung cancer fall short compared to other cancers.

“society thinks that you caused it.”

anyone can get lung cancer

the common thinking is that lung cancer is a smoker’s disease, but that isn’t the whole picture. lung cancer is the deadliest cancer in canada, accounting for about 24 per cent of all cancer deaths, according to the canadian cancer society.an estimated quarter of those cases happen to non-smokers. the heavy toll is more than breast cancer, pancreatic and colorectal cancer deaths combined.

as well, non-smoking lung cancer is increasingly recognized, especially for women, although the reasons for this aren’t understood. what is known is that many non-smokers are diagnosed at later stages because symptoms are subtle, as bev can attest to and screening targets people who smoke or have a smoking history.

for bev, an active person who has always been health-conscious, the diagnosis came as a complete shock. “i had a cold that lingered and lingered. and i thought, maybe i have a strep throat. i’ll go see my family doctor. she’ll give me an antibiotic and send me home and i’ll be feeling better.”

subtle cancer symptoms can be overlooked

that’s not how it went. her doctor thought her symptoms could be pneumonia and ordered a chest x-ray. the results showed nodules that had spread to the upper lobes of both her lungs. she was referred immediately to a cancer clinic, not knowing the extent of the diagnosis to come.

“the tumours were huge. and yet i was still working, still being active. my primary was the size of my fist. and the next biggest one was the size of a tangerine. and it had spread from one lung to the second lung. that’s why i was considered stage 4 at diagnosis. when it’s advanced, there’s fewer options. and some of the problem with the fewer options, apart from the fact that it’s more extensively spread, is there’s been an underinvestment in clinical trials for lung cancer patients, underinvestment in research for drugs. now that’s changing.”

after further diagnostic assessment and testing, she felt she had been kicked in the stomach with the news. “i was told i had six months to three years to live.”

this was 2019 when bev was 68, not ready to retire, but realizing she needed to be spending time with her family. she has a supportive circle of close friends, her husband ron and two grandchildren in her son’s family.

“in 2019, so seven years ago pretty much, lung cancer was a death sentence. for many people, it still is,” bev says. she has a classic gene mutation, meaning her cancer responded well to targeted therapy or she likely wouldn’t be here today.

her regimen was a daily pill and a deep dive into reading about lung cancer, stigma and gloomy statistics. while she felt tired, she gradually regained her energy and as the pandemic shut down the world, her love of golfing came as a gift. it was something people could do outdoors that was considered safe, so that brought her out of the isolation many were experiencing.

the five-year survival rate for lung cancer in 2019 was around 17 per cent. now it’s 22 per cent, she points out. “so, it has hardly changed. and in comparison, breast, prostate and colorectal cancers are changing. there’s more promotion and awareness. colorectal cancer has the poop test.”

as the canadian cancer society reports, the five-year survival rate for colorectal cancer is 67 per cent. breast cancer has mammograms, more self-examination and a five-year survival rate of 90 per cent. the five-year survival rate for prostate cancer is 91 per cent.

bev is now a proud advocate for people with lung cancer and supports fundraising for lung cancer canada. beyond stigma, another key concern is the lack of a broad-based screening test. “there isn’t a test for somebody like me. and the 30, 40 and 50-year-old young men and women who are being diagnosed are not being screened,” she says of the younger people living with lung cancer.

“so we’re found in advanced stages. one of the problems with lung cancer is there are very few pain receptors in the lungs. the cancer has to leave the lungs before the person may feel pain.”

self-awareness could save your life

sometimes lung cancer is detected by accident when someone is being tested for a fracture, hernia or cardiac issue, but that’s not the usual.

bev remembers meeting a woman in her mid-30s who said that when she lay at night on a particular side, she felt a little pain. and it didn’t go away. she had it checked out and they discovered early-stage lung cancer. she also makes a case for self-awareness and how, if anything feels off in your body, don’t hesitate to see a health-care provider. she’d also like to see health-care providers more aware that younger people are facing lung cancer, so if patients have any suspect concerns, lung cancer isn’t off the table.

the fact is, anyone can get lung cancer.

“you know, i was very lucky. i have always been very healthy. so i’m athletic, i eat well, i sleep well. you know, i’m a strong, healthy person, so i think that baseline helped.”

seven years in, bev says her condition is changing. the cancer is “wily” and developed resistance to her daily pill, so she’s on intravenous therapy at a clinic every three weeks with chemotherapy and lung-specific drugs.

“there’s four to five days where my energy level is a little lower, but then i get that. i go to my hospital’s cancer centre and it’s infused over the course of a day.”

you wouldn’t necessarily know anything was wrong with bev. she’s a vibrant force, happy, positive and grounded, appreciating that her life giving back as an advocate has meaning.

“i think people are surprised because i look so well. and anybody in the lung cancer community, they see a lot of different outcomes. then when somebody at the golf course said, ‘hey, you look great, bev, are you all done with your treatment?’ and i say, ‘nope, stage 4 lung cancer does not disappear. i live with this reality every day,'” she says, smiling.

model for hope and quality of life

“it’s such a scary diagnosis when people hear it, to see somebody that can have a smile on their face and could be playing golf. i think that’s good for people to see.”

but how long does she have left? it’s a question she doesn’t ask her oncologist because she doesn’t think they know.

the reality is that lung cancer is a progressive illness and resistance develops. the first line of therapy is the best chance for prolonging life. second-line therapy is a little rougher and may not last as long. she mentions one of her friends who has been through several therapies and is struggling to tell his kids he’s not going to be around forever.

“he’s just a very strong, tough role model and fighting hard. so it’s a burden that people have to live with.”

bev is grateful for the life she’s had and her quality of life. she admits that no one wants a lung cancer diagnosis at 68 or older, but what about the impact on someone who is 30 or 40?

“you’re forming your career. you might have just bought a house or car. you’ve got these debts. you’re thinking about having children and you’ve got this diagnosis and society thinks that you caused it and that there’s a low survival rate. i mean, that really made me cry in some of the early years when i was understanding that,” she says of the gutting impact of lung cancer.

“i’d already had my children. i was happily married. i had grandchildren. in fact, i used to cry that my granddaughters wouldn’t remember me. and now i’ve had all this extra time with them.”

any conversation about lung cancer should also applaud the tobacco ban and highlight the insidious vaping that’s become a popular habit and threat to lung health.

“our understanding of the implications of vaping is probably back to where tobacco was in the ’50s or ’60s. it is very, very scary. and i have to muzzle myself if i’m walking down the street or i’m driving and i see somebody vaping and thinking they’re looking cool. and i think, let me tell you what your life could be like if you get lung cancer, because we live with death on our shoulders. it doesn’t go away.”