After Linnea Duff learned at age 45 that she had developed lung cancer, she practically encouraged people to ask if she had ever smoked. But in the eight years since, her feelings have soured considerably on the too-frequent question, and she’s developed an acute sense of solidarity with fellow patients: smokers, former smokers, and never-smokers alike.
“It’s just so inappropriate,” says Duff, who believes that people with other serious illnesses don’t field so many intrusive queries. “Would you ask someone, ‘Did you eat too much?’ or ‘Did you have too much sex?’ ”
Tobacco ranks at the top of the stigma list when it comes to behaviors that have been linked to cancer. It’s a list that continues to lengthen: excessive drinking, sun tanning, exposure to the sexually transmitted human papillomavirus. Recently, frequent acid reflux has been blamed for a startling increase in the incidence of some esophageal cancers, raising the question of whether people could be criticized for indulging too much in fatty food, alcohol, or other heartburn triggers. Cancer patients may be asked about other, even more tangential behaviors, such as their ability to handle stress, says Larry Lachman, a clinical psychologist in Monterey, Calif., who counsels people with chronic illnesses.
Lachman recalls speaking with an alternative medicine practitioner shortly after his own prostate cancer diagnosis in 1997. Lachman, then in training to become a psychologist, was exploring both traditional and alternative medicine approaches. He assumed that physicians would be blaming and judgmental compared with holistic practitioners. The reverse proved to be true. Lachman spoke with a reflexologist following cancer surgery: “First thing she said to me was ‘Why did you have to bring cancer on yourself? Why did you have to manufacture your tumor?’ ”
As a longtime medical reporter, and someone whose own mother died of lung cancer years ago, I’ve seen all sides of the stigma issue. I first spoke with Duff for an article about drug research studies she’s participated in. The New Hampshire mother of three has responded remarkably well to the treatment for her malignancy, now classified as stage 4. As I wrote the piece, I wrestled with whether to include the fact that she had never smoked. Did it matter? Was it relevant to the research-driven story she had to tell?
A few months ago, Michael Douglas inspired plenty of chatter when he appeared to indicate that his stage 4 throat cancer was linked to HPV and oral sex. (A spokesman for Douglas later said that the actor was merely discussing HPV as a potential cause.) But it got me thinking all over again about stigma and our society’s fixation on blame, and whether insinuations that cancer patients are responsible for their disease will become more common as additional behavioral links are identified.
As a reporter, I believe in the power of health information to educate and hopefully, in some cases, to motivate people to change. I’ve written umpteen thousand words about sunscreen, smoking cessation, and other cancer prevention efforts. Given our family history, I’m happy that school health classes have transformed my 10-year-old into a walking anti-tobacco poster. The Douglas buzz may have paid off from a public health perspective, inspiring some people to protect themselves or their children with the HPV vaccine. But to what degree do these sorts of educational efforts stigmatize, and thus erode compassion for, individuals once they do become ill?
Duff believes that the recent Douglas discussion illustrates the rather perverse—and for some of the patients involved, quite painful—hierarchy of the cancer blame game.
After all, the actor has a well-documented history of smoking and drinking. Duff says the potential HPV connection might actually boost his standing when it comes to stigma. “I think in our current culture that, even though there may have been some snickering behind the scenes, I don’t think that oral sex is going to be viewed as negatively as even cigarette smoking,” she says.
For every 1,000 men who are smoking at age 65, 89 of them—or nearly one out of 10—are expected to die of lung cancer within the next decade, according to a 2008 study in the Journal of the National Cancer Institute. (For nonsmoking men, the number is four in 1,000.) That’s not the sort of Russian roulette I’d be eager to play; I’ve never smoked. But the data show that even years of lighting up don’t guarantee cancer—genetics and other environmental exposures are part of the cancer-causing stew, along with a hefty measure of chance.
Judgments about behavior not only unsettle and stigmatize the patient, but reflect the interrogator’s own insecurities. Frequently, those disease detectives are attempting to regain a sense of control amid the inherently random and sometimes unjust world that we all reside in, according to researchers who have studied stigma. Psychologists refer to this as the “just-world hypothesis,” a bias in thinking and perception that was first described by psychologist Melvin Lerner and colleagues more than four decades ago, and which has since been documented in numerous books and articles.
“I think that in one part there is a fundamental assumption in our society that the world is a just place, and that bad things don’t happen to good people,” says Gerald Devins, a stigma researcher and senior scientist at the Ontario Cancer Institute in Toronto. “And I think when bad things happen to good people, it’s threatening to everybody.”
“Secondly, you can say knowledge is power in a sense,” Devins says. “If we feel like we understand something, it gives us the illusion of control.”
Already, cancer patients can be their own worst critics, says Timothy Turnham, executive director of the Melanoma Research Foundation. Those with skin cancer beat themselves up about spending too much time in the sun. Then they obsess about why they didn’t check out that odd-looking mole sooner. “Not only is not relevant, but it can be quite painful,” Turnham says. “How many things do we regret in life? It’s a distraction that you really don’t need when you are in a fight for your life.”
Becky Herry, a 57-year-old nurse in Santa Cruz, Calif., who has stage 4 melanoma, says that some people will lob what she describes as non-questions with a dose of judgment embedded within. “People will say, ‘You were always so tan,’ ” she says. “I think it’s people’s own fear,” Herry says. “They think, ‘How much time did I spend in the sun compared with how much time Becky spent in the sun, and so what is my risk?’ ”
Not surprisingly, these sorts of lines of questioning can exacerbate the emotional roller coaster of cancer treatment. A recent study found that at least one-third of men with colon cancer experienced some degree of stigma or self-blame related to their malignancy. That group appeared to be more vulnerable to depression as well, the researchers found.
The stigma-depression link also has been identified in lung cancer patients, according to another recent study. Higher levels of perceived stigma correlated with more acute depression. “Reality is perception, at least to these folks,” says study author Brian Gonzalez of Moffitt Cancer Center in Tampa, Fla.
Stigma also can undercut research spending, as the National Lung Cancer Partnership details with a stark 2012 analysis. Each year, nearly 157,000 Americans die of lung cancer, compared with 49,380 from colon cancer and 39,970 from breast cancer. Yet, far fewer research dollars are spent per lung cancer death—$1,490 versus $6,339 for colon cancer and $21,641 for breast cancer.
And no price can be attached to the sense of isolation, for patients and their loved ones. When my mother’s tumor was diagnosed at age 45, my younger sister was partway through high school. She was sworn to secrecy, navigating the hallways of adolescent angst pretending all was fine at home. I was attending college a plane flight away and was less emotionally circumscribed, able to share my fears with friends who wouldn’t cross paths with my mother in the grocery store.
Herry has returned to playing tennis, but she feels self-conscious about that sun-exposed decision, as well as how people will view her attire. Even with the thick layers of sunscreen she slathers on, should she venture out in anything less than long sleeves?
Cancer patients aren’t the only ones sideswiped by insensitivity. Stigma also impacts individuals with HIV, mental illness, or obesity. Take New Jersey Gov. Chris Christie, buffeted by speculation that his girth will prevent him from reaching the Oval Office. Lachman notes that the media detailed Bill Clinton’s fat-prone dietary choices when they wrote about the former president’s heart bypass in 2004.
But it is “childhood magical thinking,” as Lachman describes it, that good behaviors provide cancer immunity. The psychologist, who treats a lot of patients with cancer, recounts how unsettled his friends and family were by his own diagnosis. He adhered to a vegetarian diet and ran five miles multiple times each week; he was diagnosed with prostate cancer at age 39. The average age for diagnosis: 67. “My urologist called me his pediatric patient,” Lachman says.
Although society has traveled far from the era when the word “cancer” could not be spoken, we still have a ways to go in terms of how sensitively we interact with patients. “I think cancer is such a mystery for people,” Turnham says. “It’s this boogeyman that we’ve all grown up with. There is a kind of morbid curiosity about it.”
Duff speculates that people may ask about her smoking history in part out of shock—for much of her treatment, she’s looked relatively young and healthy. “I do think I probably get more sympathy or empathy right off the bat because I say no [to the smoking question].”
However, “what it does underscore is that I just had some really crappy luck,” she says with a short burst of ironic laughter. “And that doesn’t make me feel very good either. So I see this as a lose-lose question.”
For 18 years and counting now, I typically say only that my mother died of cancer. If pressed, I will specify that she died of lung cancer. And then, preferring to head off the inevitable follow-up, I add: “And yes, she did smoke.”
The tumor was found by serendipity; a scan for an unrelated thyroid operation had revealed a worrisome spot on her lungs. After her diagnosis, a good chunk of her lung was removed. And yes, she did quit smoking after surgery, another question I tend to parry in advance.
She bought us time, the blessing of six more years, with no sign of cancer on numerous scans. Until it returned, the cancer cells widely scattered and untreatable.
My mother was more than a smoker. She was an incessant reader who loved to travel and wore clothes elegantly on her slender frame. She became a health food nut before it was cool, baking granola and buying natural peanut butter that my sister and I hated to stir.
Because she died at age 51, she was never able to enjoy my husband’s wry sense of humor or my son’s ebullience. Was her death just desserts, or just tragic? If people would just stop implying that this is an underlying question, I wouldn’t be forced to provide the answer.