Breathe Deeply

Lung cancer patients face a diagnosis that is not just devastating, it’s isolating. Are new treatments starting to turn attitudes around?

Garfield Scheie (pronounced “shay”) had his first cigarette at age 14. “The guy I was with told me I needed to inhale it,” Scheie recalls. Then he gave Scheie another one. “After that, I was three shades of green.” Scheie is reminiscing from a meeting room at Edmonton’s Cross Cancer Institute; he’s just finished his fourth weekly treatment on a clinical trial drug to treat his non-small cell lung cancer.

Illustration by Heff O’Reilly

You think you know how this story goes, but you’re wrong.

Those two smokes nearly five decades ago represent Scheie’s lifetime intake – he’s a non-smoker. Now in his mid-60s, the Rimbey, Alberta resident is among the 15 per cent of lung cancer patients who were never habitual or even occasional smokers.

Scheie is an upbeat semi-retired heavy equipment operator. Three years ago he went to see a doctor for what he thought was pneumonia. He was admitted to hospital in Red Deer, where doctors drained 1,500 cc of fluid from his right lung. A similar procedure took place the following week in Edmonton. A specialist took a biopsy and sent Scheie home with a broad-spectrum antibiotic. The cancer diagnosis came at a follow-up appointment.

Since then, Scheie has been through a number of treatments, and is currently taking an intravenous trial drug once a week at the Cross under the supervision of Dr. Quincy Chu. “My daughter calls me a lab rat,” Scheie says and one of his frequent, quick grins flashes across his face. White-haired and ball-capped, he looks well – it’s the ready smile. In a hallway at the Cross he speaks to a woman recently diagnosed with the same kind of cancer. His message to her is “don’t quit, don’t give up hope.” Notably, he doesn’t ask her the question that most lung cancer patients get: “Did you smoke?”

“That’s the first thing people ask me,” Judith Winer says. Winer, a Calgary resident, is a fundraiser for lung cancer research and was diagnosed with stage IV non-small cell adenocarcinoma six years ago, at 49. And yes, she says, she was a smoker. It begs the questions: Does it really matter if a lung cancer patient is a former smoker? Are we over that yet? “No, we’re not over it,” Winer says. “People are put off. I would love to get rid of the black cloud, the stigma of being a smoker with cancer.”

Winer was diagnosed after an MRI for pelvic pain revealed a mass on her right lung. Surgery to remove the mass fizzled – surgeons cancelled the procedure when they opened her chest and found multiple tumours on both lungs. She’s had mixed success with chemotherapy, including a serious adverse reaction that landed her in hospital for a couple of weeks in 2009.

It’s been a tough road for Winer. There’s little of the public outpouring of support that accompanies other cancers. Fortunately she and others in southern Alberta have benefitted from regular support at a group for lung cancer patients and families at the Tom Baker Cancer Centre.

Angie Gschaid, (pronounced “shade”) now 62, has also fielded the “did you smoke?” questions since her diagnosis with lung cancer in 2006. “It’s the first thing everyone asks.” (In her case the answer is yes, decades ago, socially.) She doesn’t let it get to her and she knows she has nothing to apologize for. “You have to be your own advocate,” she says. “I’m still on this side of the ground.” Gschaid says that lung cancer patients can feel shunned, as though they don’t deserve the best standard of care. Now in remission, she says that her advocacy for her own illness and her search for expertise led her to Dr. Gwynn Bebb at the Tom Baker Cancer Centre.

When he started his specialty training in cancer care in 2000, Bebb had thought that, from a research standpoint, he might like to treat lymphoma patients. With lymphoma, he says, there are a number of known subtypes of disease and clinicians arrive at a treatment plan according to these characteristics. “With lung cancer,” Bebb says, “patients were all lumped together.”

Bebb saw that the clinical need lay in lung cancer. It was perfect timing for a researcher to get involved; the one-size-fits-all treatment was starting to change. In 2004, a new picture emerged, Bebb says. Researchers found subtypes of lung cancer sensitive to a new class of drugs. Specifically, he points to a small percentage of patients whose cancer has a specific growth factor receptor, called EGFR, targeted by a drug called Iressa (getfitinib). Bebb’s patient Carol Olson is one of them.

A Calgary resident, Olson has a long experience with cancer that includes three different primary cancers: breast (1995), endocervical (2004) and lung (2007). The lung cancer was primary, meaning that it was not the result of her earlier cancers that had spread; those cancers were cured. And enough time had passed that Olson and her family were justifiably optimistic that the lung cancer was cured, too. Then, at her family cabin last year, Olson got up and took a step to cross the living room. Her femur snapped – the lung cancer had metastasized. “It was devastating,” she says. An MRI revealed cancer in her brain, liver, adrenal gland, spine, and the fracture site on her leg.

A radiation oncologist treated spots on her brain and bones, and Bebb had her cancer tested for EGFR sensitivity – a test that has been available for less than two years. “Only about seven to 10 per cent of non-small cell lung cancer patients have this mutation, although that number may approach 30 per cent or more in South East Asians,” Bebb says. Olson’s cancer fell into the small group. “Carol’s medicine is covered by the drug company who also paid for the test. This is a bit contentious politically.” Drug companies that pay for studies have an obvious conflict of interest, but it speeds the studies.

That’s of little concern to Olson. Her cancer has receded and some of the spots have disappeared. She takes the Iressa once a day in pill form and has had few side effects – hardly what you’d imagine a course of chemotherapy would look like in a patient with stage IV lung cancer. Olson, no stranger to cancer treatment, calls it a blessing.

It’s possible that targeted, research-intensive therapy arrived later to lung cancer because of the attitudes that many lung cancer patients deal with, that the illness is self-induced. The concordant stereotype, Bebb says, is that lung cancer patients all suffer poor outcomes. But the picture of lung cancer treatment is changing. “Clearly we would like more such predictive tests and tailored treatments,” Bebb says, and mentions that there is a second such treatment emerging that will hopefully widen the circle of patients who will benefit.

And hopefully new treatments will engender a better public face for the disease. The goal of anti-smoking advocates is prevention, not to vilify people with the disease. Nobody asks for cancer. For that matter, nobody asks for an addiction, but both are personal and public health issues that require the best research and treatment available.

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