what it feels like: facing stage 4 lung cancer – ‘the hardest thing i ever had to do was share the news with my kids’
“the blessing in this is that i’ve spent so much more time with my wife and my kids. and i just want to be around as long as i can for them.”
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“the hardest thing i ever had to do was share the news with my kids. these kids are resilient, they’re fantastic. they keep me going. my wife keeps me going,” john says through his journey with lung cancer.
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john was an auto executive in a fast-paced demanding role. he traveled at least one week a month but would always make time for his family and coaching his kids’ hockey and baseball teams. the balancing act was tough and highly rewarding.
but now the toronto father of three has a different job. diagnosed at age 49 in 2022 with advanced stage 4 lung cancer and a rare genetic mutation, the odds are not in his favour. “i just want to be around for my wife and kids. that’s my full-time job now.”
‘you have lung cancer’
john, like many during the pandemic, was knocked flat by covid-19 in march 2022 – at least that’s what he thought was the problem. he had flu-like symptoms as well as a persistent cough, severe chest pain and shortness of breath. he thought he’d recover in a few days, but he was still feeling ill after a couple weeks and his wife insisted he get to his family doctor. his doctor had retired, so this was the first appointment with his new physician who referred him for a chest x-ray. two days after the x-ray, john got a call from the doctor who said there was something on the x-ray that they wanted to investigate and he would need a ct scan. the wait for the scan would be several weeks.
“i didn’t think too much of that at the time. i just assumed maybe it’s pneumonia or something else,” john says. he’d been healthy and active all his life, so it couldn’t be serious. he was back at work in april, free of symptoms except for soreness in his chest, “like pressure in the chest as if somebody was sitting on my chest.” after a week of the continued chest pain, john knew there had to be something going on. he went to the clinic where his ct scan was scheduled for a future date and let the reception person know he would sit and wait in case they had an unexpected opening or cancellation. luckily, there was a cancellation that day and he had the scan. two days later, he got the call from his doctor to come into his office.
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“not knowing what that meant, i went in and he said ‘you have lung cancer.’ and obviously i was shocked. i had no smoking in my history in my life, no history of lung cancer in the family, so i was completely unprepared for it,” he explains of the news that changed almost everything for him. “i couldn’t believe it.” his doctor started talking about next steps to get a biopsy done to determine the stage and exact type of his lung cancer, but most of the conversation felt surreal.
“i went home in shock and disbelief, shared the news with my wife and obviously she was floored and you go through the phase where you don’t believe it,” he admits. then came the biopsy and a pet scan. shortly afterward, he got the call from his doctor when he was driving and he pulled over. his doctor asked if he’d like to come into his office or hear the results on the phone, and john decided that he needed to know right away and didn’t want to wait: it was stage 4 lung cancer that had spread to a spot in the bone of his shoulder blade and lymph nodes where he had been feeling some pain, and his chest pain and shortness of breath was explained by the tumour in his lung.
“stage 4 basically means it’s on the move,” he says, now fully versed in certain aspects of the disease. “it’s in different parts of the body and it’s in the blood. when you’re initially diagnosed with stage 4 and you don’t know what it means, you think you’re done. you think you’ve got months.”
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by comparison, if you’re diagnosed with stage 1, there’s the possibility of having the tumour surgically removed and you could be cured, john says. “but once you’re stage 4, it’s not curable. it’s not something that we have the medicine or the technology to cure. so what you’re trying to do is contain it and live with it as long as you can.”
it’s been two-and-a-half years since his diagnosis, when he first thought he had just months to live.
lung cancer stigma and raising awareness
john is one of thousands of canadians whose lung cancer is diagnosed at a more advanced stage where options are limited. lung cancer is the leading cause of cancer death and is predicted to take the lives of an estimated 20,000 canadians in 2024, according to the canadian cancer statistics advisory committee report published in the canadian medical association journal in may.
despite this, lung cancer has long been stigmatized, advocates from the canadian cancer society and others are quick to point out: “sometimes stigma comes from fear of a disease or from the fact that a disease is deadly. but lung cancer carries stigma today mainly because of its connection to smoking. smoking is the main risk for lung cancer (and many other diseases). research has shown that many people think people with lung cancer should have known better than to smoke and that they are to be blamed for getting the disease. but that view is unfair.” many people mistakenly assume that lung cancer only affects smokers or is more common in men because of their higher smoking rates.
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but the reality is anyone can get lung cancer at any age. lung cancer among those who have never smoked is the fifth leading cause of cancer-related deaths worldwide. the disease may have no apparent cause in some cases, or possible causes like exposure to radon, asbestos and outdoor air pollution. and some people have something in their genes that makes them more likely to develop lung cancer.
november is lung cancer awareness month and john wants to share his story so that canadians will understand that lung cancer can affect anyone. but he’s proof that there’s hope, even in the midst of the toughest moments.
“the hardest thing i ever had to do was share the news with my kids. these kids are resilient, they’re fantastic. they keep me going. my wife keeps me going,” he says. he’s on long-term disability and hasn’t worked since his diagnosis, but he’s here enjoying the days.
john enjoys travel and tries to stay as active as he can, including coaching his children’s hockey and baseball teams.
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a rare genetic mutation
as with many cancers, treatment isn’t easy, fraught with uncertainties and debilitating side effects. instead of moving straight to chemotherapy to try to kill the cancer cells and stop its aggressive spread, his oncology team at princess margaret cancer centre in toronto recommended a more recent tool in cancer-fighting care — a blood biopsy to pinpoint specifically which gene mutation was responsible for his cancer. lung cancer is not a single disease, but dozens of molecularly distinct variations which has moved the science forward in personalized medicine.
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the biopsy revealed that the egfr exon 20 insertion mutation, or exon 20, was the problem. “one day, for whatever reason, it just mutated and instead of the growth of those cells stopping and starting like normal, it just kept growing and it turned into cancer for whatever reason.”
exon 20 is a rare form of non-small cell lung cancer that accounts for about one in 30 lung cancer cases. it’s more common in people who never smoked and in asians. for john, the knowledge meant a critical turning point because he could be put on targeted drugs unique to his situation. but there are issues that come with potent medications and john had gastrointestinal trouble, food limitations (he cut out dairy, spices and dialed back on red meat), and he lost 20 lbs in the first week because he couldn’t keep anything down or keep anything in. his oncologist had to change the dosage until john could tolerate the drug, and in a couple months the bone pain and chest pain went away and he had some energy back.
then 10 months later, the regular ct scan monitoring showed his cancer was growing again.
as john explains, “the cancer is always there. it’s like a simmering pot of boiling water and the treatment that you’re on is the lid keeping everything at bay. then eventually, the cancer finds a workaround, and the drug that you’re on stops working.”
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there’s not a long list of options for treatment and the next drug he tried for several months wasn’t effective. his breathing became laboured, his chest pain got worse and scans showed he had a lesion in his brain. next came a course of chemotherapy and radiation; the radiation worked well on his brain lesion, and he tolerated the chemo, that was done every three weeks, managing the fatigue and nausea that would subside several days after the infusion.
then in june of this year, his cancer had spread. the chemotherapy was no longer working, so, with options shrinking, john went on a new precision drug that he takes by infusion every two weeks. it’s keeping the lid on his cancer, so far.
finding connection and fighting for others
how long does he have?
“you know, 22 per cent of folks that are diagnosed with lung cancer are still alive after five years,” he says. “i remember when i was first diagnosed, that number was 19 per cent, so it’s creeping up. but with prostate cancer and breast cancer, those numbers are closer to 90 per cent. and the thing is, most people aren’t screened for lung cancer. that’s one of the things that hopefully gets changed in the future, maybe with new technology like low-dose ct scans or a blood test or some other test that anybody could take as part of their regular checkup.”
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his experience with lung cancer has also made him a passionate advocate. he’s canadian co-chair of the patient advocacy exon 20 group where he’s met others who have similar gene mutations who’ve become his friends and fellow advocates to push for more research funding and awareness about lung cancer. he talks about the healthcare burden of cost for all the scans and blood tests patients go through, the high percentage of lung cancer cases compared to breast and prostate cancer, and the comparatively tiny percentage of government funding that goes to lung cancer.
the balm for many patients in his shoes is getting educated on lung cancer, available treatments and others in development, and spending time with others who understand exactly what you’re going through. the support and friendship can be bittersweet, he says of fellow patients he’s met through exon 20 and lung cancer canada who have died from their cancer.
“when people that you’re becoming closer with who you’re talking with on a frequent basis. and then they’re not there anymore. i realize that could be me very soon,” he says, quickly adding he’s not without hope.
“the blessing in this is that i’ve spent so much more time with my wife and my kids. and i just want to be around as long as i can for them.”
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