The story always begins with a peculiar, if not necessarily alarming, moment that is easily spun into something small and unremarkable. A sudden, fleeting bout of breathlessness. A nasty headache. For Heing Taing, a 37-year-old Calgary optometrist, it was shoulder pain — logically explained by her often-ergonomically challenging work. “I spent a year at physiotherapy, massage and chiropractic appointments,” says Heing. “Nothing was working.” No wonder: it wasn’t muscle pain. It was cancer.
Heing, now 40, has stage-four lung cancer — a shocking diagnosis, particularly, she says, for an athletic, lifelong non-smoker with no family history of the illness. While the last three years have been among the most emotionally and physically painful of her life, Heing — like the other Calgarians you’re about the meet — is keen to share the hope and optimism she has found in the changing narrative of lung cancer.
Unlike breast and prostate cancer, whose survival rates have risen dramatically in recent years thanks to standardized screening and advances in treatment, lung cancer has always sat heavily and gloomily in the public mind. Indeed, survival rates for lung cancer are low compared to other cancers: the five-year survival rate sits at less than 18 per cent, versus breast cancer at 89.7 per cent and prostate at 98.
Such a bleak stat can be pinned, among other things, to the more-often-than-not discovery of the disease when it’s already at stage three or four (out of four stages). Currently in Canada, there is no standardized pre-screening in place for lung cancer. On top of that, or perhaps linked to it, lung cancer is plagued by widespread negative stereotyping and blame around the fact that nearly 85 per cent of its sufferers are current or former smokers (or were exposed to second-hand smoke). That attitude — that lung cancer patients brought the illness upon themselves — has made for a paucity of research funding.
Still, recent advances in precision medicine have dramatically altered the trajectory of cancer’s biggest killer. It’s long been time to reframe our collective perception of the disease.
Dr. Don Morris is an associate professor of oncology at UCalgary and a lung cancer specialist at the Tom Baker Cancer Centre. He says that, in addition to a province-wide smoking-cessation program, what lung cancer most needs to improve survivability rates is the advent of low-dose CT-scan screening, currently in trial phase. “Picking up the disease early is the main way to deal with it,” says Dr. Morris. “We need to get more people into screening programs.”
Surprisingly, despite the challenges its researchers and clinicians face, in the field of oncology, lung cancer is currently moving the fastest in terms of developing new strategies and treatments. “In the past six years, lungs have become a preferred site to study,” says Dr. Morris. “Lung cancer is a poster child for how to fit precision medicine into health care.” With few exceptions, he adds, “ten to 15 years ago, it was one size fits all — now, when a medication doesn’t work, we can biopsy and get information to offer subsequent lines of treatment. People can live three times longer than before.” At long last, Dr. Morris adds, “we’re at the roots of the tree.”
Dr. Morris’s associate, medical oncologist Dr. Gwyn Bebb — who oversees customized treatment plans for the patients featured in this story — agrees. “Rather than lagging behind, lung cancer has really come to the forefront with precision medicine treatments,” Bebb says.
Where chemotherapy was once the only treatment option for lung cancer, patients who present one of two biomarkers may be eligible for a growing variety of drugs that target specific gene mutations (ALK and EGFR). Both doctors believe that it is possible lung cancer may one day be treated as a chronic illness, rather than as a death sentence.
WHAT IS PRECISION MEDICINE?
In 2004, the discovery of a certain mutation (known as EGFR and, later, one known as ALK) in lung tumours marked the beginning of targeted treatment in lung cancer. Whereas a decade ago, the only treatment for lung cancer was chemotherapy, now, if a patient’s biopsy reveals an actionable mutation, new targeted therapies (most commonly in pill form) are showing positive activity. This “precision medicine” is available to only the three to four per cent of patients who test positive for the necessary biomarkers; while thousands of biomarkers exist, so far only EGFR and ALK have been located and can be targeted.
While even the newest treatments for the disease are rarely curative, and are effective in only a fraction of patients, this recent success is beginning to unravel the complexity of drug resistance. Outcomes are improving for many lung cancer patients. UCalgary’s Cumming School of Medicine strives to be a world leader in discovering genetic mutations and successfully implementing new precision medicine approaches for lung and other cancers.
Few people can speak with such startling straightforwardness about their own complex illness as can Heing Taing. Granted, Heing is a research-driven medical professional, so it’s no wonder she’s well-versed on matters of health care. What is surprising, given her level of fluency in that realm, is Heing’s inimitable generosity and vulnerability in sharing her story. Her blog, titled “Lung Cancer & Life Lessons,"is a both a precise medical chronology of her cancer so far and a poignant, personal diary of her evolving emotional state.
Heing was finally diagnosed with lung cancer on Dec.28, 2013. She’s since endured three years of various treatments for stage-four cancer that has spread to her bones, including chemotherapy, immunotherapy and, in Chicago, targeted Gammaknife radiosurgery. She’s experienced difficult and painful side effects and related health problems, but she’s also travelled with her husband, stayed close with friends and family and, she writes, “destressed, detoxified, decluttered, unburdened, simplified, connected — and become truer to myself.”
Soon after Heing’s initial diagnosis, she tested positive for the EGFR biomarker. Dr. Bebb prescribed an inhibitor that Heing took, with success, for nearly a year. When it stopped working, she was prescribed immunotherapy that, says Heing, proved the most difficult (and unsuccessful) trial of her disease so far. In August 2016, Heing was put on a just- approved, second-generation EGFR-targeted drug to which, says Bebb, she has responded well.
Heing is spending a good part of this winter in Victoria, B.C., where, among other restorative activities, she’ll continue to blog with heart and precision. “The most important lessons I wanted to share,” Heing writes in a recent entry, “are that anyone can get lung cancer, and that the stigma about it is not only wrong, it's harming us in terms of how a lack of compassion affects funding for research and early diagnoses.” She urges her readers to think differently about the disease and, meanwhile, to do as she does: “Go for a hike, go for a swim, talk incessantly, use those lungs and appreciate what you have.”
A few days after Terry Morey started antibiotics for a persistent cough and cold, he bundled up for a brisk November walk on his Cochrane acreage. When he came back into his house a few minutes later, gasping for air, he assumed his breathlessness was due to either the cold weather or, perhaps, a side-effect from the medication. “My doctor took another listen to my chest,” says Terry, a non-smoker who, at the time, had recently retired from corporate work in the oil industry. “He said, ‘I don’t get it — there’s no rattling in your chest.'”
Terry was promptly sent for an X-ray and, the next day, had two litres of fluid drained off his lungs. Three days after that, he was told the biopsy of that fluid showed it was cancerous. He had stage-four lung cancer.
“You know how it was for me?” recalls Terry, a world-class joker and grandfather of six. “I said, ‘This isn’t happening to me! But, well, if it is — hell, I’m gonna beat it.” He admits he didn’t immediately “grasp the severity” of the diagnosis. Even when told that, without treatment, he’d only have six months to live and possibly up to 18 months with chemotherapy, “it didn’t sink in that I might die of cancer in the short term — I’m an upbeat guy.”
Chemotherapy, however, has a way of knocking the cheer out of even a pathological optimist. “I spent February 2014 wrapped in a blanket in front of my TV, watching the Olympics — that, plus a lot of support from family and friends, is how I got through it.”
Things looked up for a while until, four months later, the tumours started to grow again.
As Dr. Bebb explains, Terry didn’t start out as a candidate for precision medicine because there wasn’t sufficient material in his original biopsy to check for biomarkers. Several months later, Dr. Bebb ordered a bronchoscopy (while sequential biopsies are becoming the trend in order to keep up with a cancer’s evolution, a lung biopsy is more invasive and presents higher risk than with, say,the equivalents for breast or skin cancer). “That’s when we discovered Terry had the biomarker for ALK.”
Since starting the ALK-targeting drugs 15 months ago, Terry’s CT scans have shown regression in the tumours’ size. While it’s almost inevitable that the cancer will develop resistance to this particular medication, for now, Terry feels good and is as sunny as he ever was.
In February 2016, Ken Sikorski — a “Calgary guy,” born and raised in Inglewood — retired after 29 years as a conductor and switch operator with CP Rail. An outdoorsman who loves nothing more than a trip into the woods with his brother and other friends to hunt, fish and otherwise immerse himself in the natural world, Ken was looking forward to his first year as an entirely free agent, liberated from a work schedule, to do exactly what he wanted with his time.
That feeling of freedom was short-lived: within weeks of retiring, a days-long headache Ken had been enduring turned to vertigo and, after a couple of subsequent falls, he was sent for an MRI. Before he knew what was going on with his head, Ken was scheduled for a CT scan of his lungs. “I was confused — what did my lungs have to do with my head?” he recalls. Soon enough, Ken learned he had lung cancer that had metastasized to his brain.
Ken, who has stage-four lung cancer, started smoking in his early 20s — and quit 34 years ago. Dr. Bebb calls lung cancer “a disease of former smokers,” although it’s impossible to say exactly what causes tumours to grow in some people and not in others. In any case, a biopsy revealed the relatively good news that Ken was ALK-positive. Dr. Bebb immediately started his patient on an ALK inhibitor. It worked, and then it didn’t.
“Even though a patient can feel better within three or four days if a drug is working for them, it takes six to eight weeks to notice the change on a CT scan,” says Bebb. As soon as it was clear that Ken’s tumours were, indeed, progressing, he prescribed a second-generation medication that had just become available on a special-access program through the pharmaceutical company.
Both patient and doctor have been pleased to note that the second-generation drug has shown better activity against the cancer in Ken’s brain, as well.
As Dr. Bebb puts it, “there’s a fine line between hope and reality with these drugs.” But, he says, even though only a small percentage of patients are eligible to take them, “they are clearly changing the landscape of cancer.”