“Did you smoke?”
That’s the first question people with lung cancer often hear when they tell someone about their diagnosis. It’s a question that carries an unmistakable subtext of accusation and blame. Such attitudes compound patients’ distress, bringing feelings of guilt, shame, anger and social isolation. The stigma affects access to treatment, research funding, public empathy and support for all people with lung cancer, whether they’re current smokers, former smokers or never smoked.
Don Stranathan, 66, of Santa Rosa, California, diagnosed with Stage IV non-small-cell lung cancer in 2009, gets asked “the question” frequently. He quit smoking cigarettes and what he calls “heavy drinking” 30 years before his lung cancer diagnosis. He had the occasional cigar until 1998, when he was diagnosed with a heart condition.
“I just say, ‘I engaged in risky behavior,’” he says. “I think that’s more important than coming right out and saying, ‘I was never a smoker’ or ‘I smoked’ because when we do that we’re putting more attention on the stigma.”
Public health campaigns have rightly delivered the message that smoking increases lung cancer risk. Yet most people don’t know that there are other causes, such as radon exposure (the second leading cause of lung cancer), diesel fumes and other toxins, as well as secondhand smoke.
Because lung cancer is so firmly associated with smoking in people’s minds, it’s perceived as a “self-inflicted disease,” like HIV often is, says Pierre P. Massion, MD, a lung cancer researcher and physician at the Vanderbilt-Ingram Cancer Center in Nashville. He considers smokers with lung cancer to be in the grip of “a very difficult addiction.”
As a result, like people with HIV, people with lung cancer are often seen as essentially causing their own disease, and they may be hesitant to disclose their diagnosis to others. And like HIV advocates, many lung cancer advocates have made fighting stigma part of their mission.
Stranathan says stigma can come even from others in the lung cancer community when they tell their stories.
“They say, ‘I was diagnosed with lung cancer and I was never a smoker.’ I understand. There is such a stigma that they want to say, ‘Hey, I didn’t do anything to cause this,’” he says. “But what a person who was a smoker hears is, ‘I don’t deserve this—maybe he does, but not me—because I was never a smoker.’”
Health care providers also may reflect the stigma in their attitudes and care. Research on primary care doctors showed that they were less likely to refer advanced lung cancer patients for treatment than people with advanced breast cancer. Some surgeons refuse to operate on smokers with lung cancer, requiring them to quit first because smokers have a higher risk of postoperative complications, says Massion. Smoking cessation attempts can delay surgery by a month or two, and some people are unable to quit.
The bias also affects research that could help develop new treatments. Although there are more deaths from lung cancer each year in the United States than deaths from any other cancer, research funding per death is far lower. According to 2017 statistics on federally funded research compiled by the LUNGevity Foundation, lung cancer research received only $2,399 per death, compared with $14,533 for prostate cancer and $24,061 for breast cancer.
Stranathan uses “the question” as an opportunity to inform people that more than 60 percent of those diagnosed with lung cancer are either former smokers or never smoked.
“There’s definitely something more than just smoking that’s causing lung cancer,” he says. And if his questioners say they never smoked, he tells them, “That’s not a get-out-of-jail-free card. Because if you have lungs, you can get lung cancer.”
Click here to read the feature article “Out of the Blue: How an unexpected lung cancer diagnosis reshaped Laura Greco’s world.”