by Rick Montgomery
This article was originally published in the Kansas City Star on May 5th, 2012.
A pesky cough, that's all.
The last thing on Michaelle Gall's mind was late-stage lung cancer.
She had just turned 41. She was a physically fit mom and nonsmoker, except for the rare social occasions when some friends might light up.
What created the Lenexa woman's tumors is a mystery. It's that way each year for tens of thousands of Americans, mostly women, who defy the conventional profile of a lung cancer patient.
With smoking rates plummeting and U.S. deaths to lung cancer dropping, research shows that roughly one in five women now diagnosed seldom, if ever, put a cigarette to their lips. The same is thought to be true for about one in 10 men.
Only in recent years have scientists begun to explore why.
For Gall, the coughing that arose around Christmas led to a doctor visit in January.
"I turned 41 that month and less than a month later, I find out I'm a lung cancer survivor."
Added Gall, upbeat in manner but still adjusting to the shock: "I say 'survivor' because a nurse told me that now I know I have it, I should consider myself a survivor."
Her treatment is just beginning, and doctors are hopeful she'll benefit from a new drug that targets a genetic abnormality found in Gall and a small percentage of other cancer patients.
The larger question, yet to be answered, is why lung cancer not linked to a history of smoking appears more apt to strike women than men.
The peripheral hazards would seem just as dangerous to men: exposure to radon gas in the basement, or to asbestos, or to secondhand smoke. Genetics and air pollutants can also trigger the disease, as can unventilated cooking oil fumes, which in some parts of the world is related to women's work.
And there's this question: In an age of anti-smoking campaigns proving so successful in cutting lung cancer deaths, how should society deal with the others -- those patients rocked by the news that they have an often deadly condition through no fault of their own?
"The nonsmokers who survive lung cancer are some of our best advocates for awareness," said Regina Vidaver of the National Lung Cancer Partnership, which advocates for increased federal funding of research. "They're free from that stigma that society places, I'd say unjustly, on smokers who get sick."
The group is not tiny. Of the 200,000 or so Americans diagnosed yearly with lung cancer, about 15 percent -- or 30,000 -- are nonsmokers, studies suggest. Even if we took away all of the smokers and ex-smokers from the pool of patients, lung cancer would rank seventh among the leading types of cancer afflicting the U.S. public.
Two-thirds of nonsmokers now battling the disease are women. That could be a function of statistical probability, some researchers say. Women in the general population smoke less than men and would probably represent the majority of any group of nonsmokers, including those with cancer.
Still, some studies raise the possibility that women may actually be more susceptible.
Stanford University oncologist Heather A. Wakelee headed up a 2007 study that found lung cancer rates among "never smokers" ranged from 4.8 to 13.7 per 100,000 men in a year, and 14.4 to 20.8 per 100,000 women.
"Those of us who treat the disease get a sense that these incidence rates for nonsmokers are increasing," Wakelee said in a telephone interview. "But getting firm numbers is tricky" because the national cancer registry does not collect data on patients' smoking habits.
On the positive side, emerging research leads doctors to believe that nonsmoking women -- those who have smoked fewer than 100 cigarettes in their lifetime -- tend to respond better to treatment than nonsmoking men do.
"What is causing these cancers in people who don't smoke? We don't know, and I doubt we'll ever find a particular cause," said oncologist Ramaswamy Govindan at the Washington University School of Medicine in St. Louis.
"It could be genetic, or a combination of factors. ... It's mostly bad luck. A random thing."
Montessa Lee was 28 when she was diagnosed.
The Maryland schoolteacher had classic symptoms of lung cancer -- shortness of breath, stabbing pains in the chest, discomfort in her back and neck.
But because she had never smoked, Lee and her doctors assumed she was asthmatic or had come down with bronchitis. Antibiotics were prescribed.
Months passed and the symptoms worsened. Maybe a heart problem, the doctors thought. By the time they zeroed in on the possibility of lung cancer, Lee had developed a tumor 15 centimeters wide.
"I became angry because back then -- in 2006 -- there wasn't much research on younger nonsmokers who got cancer. It was all about smoking," she said. "I wound up turning my anger into advocacy. I had a lot of faith and family support, and I knew this was going to become a healing testimony."
Lee withstood a regimen of chemotherapy and radiation treatments and has been cancer-free for five years.
"Because science has turned more attention to people like me, now there's hope," she said.
Public awareness of lung cancer afflicting nonsmoking women rose with the 2006 death of Dana Reeve, the 44-year-old widow of actor Christopher Reeve. Reports the following year in the Journal of Clinical Oncology estimated "that 15 percent of men and 53 percent of all women with lung cancer worldwide are never smokers," though researchers were stumped about the reasons.
In Asia, high rates of women diagnosed with lung cancer were linked to heavy exposure to unventilated smoke of cooking oils used in Asian dishes, a problem not thought to be serious in the United States.
In recent years, scientists have been examining the role of estrogen in the spread of lung cancer and its potential treatment.
Joan Schiller, deputy director of the Simmons Cancer Center in Texas, told the American Society of Clinical Oncologists in a 2010 interview: "This is such a relatively new field, we're just beginning to explore all the options. ... Perhaps estrogen is driving lung cancer in some people, just as estrogen drives breast cancer in some people."
If so, estrogen receptors could be targeted in therapy to drive the cancer out, she said.
In Gall's case, a drug approved for lung cancer patients just last summer could be a lifesaver.
Crizotinib, developed by Pfizer under the brand name Xalkori, has been found to shrink or stabilize tumors in patients carrying a gene mutation known as ALK, or anaplastic lymphoma kinase.
The U.S. Food and Drug Administration sped up approval of the oral drug for some patients diagnosed with non-small-cell lung cancer after weighing the drug's success in attacking other kinds of cancer.
Gall is one of about 9,000 Americans diagnosed annually whose cancer appears driven by the ALK mutation.
"The timing of this drug's approval was very fortunate for her," said her oncologist, Chao Huang, who works for the University of Kansas and VA hospitals.
Gall said she hopes the medication will keep her from having to undergo chemotherapy.
As for the emotional toll of hearing she has lung cancer -- and being clueless to how she got it -- Gall resists thoughts that might distract from her goal to get well.
"I try not to dwell on the why because it just takes you down a rabbit hole, and that's not good," she said. "I try to look forward and not backward."
Husband Kurt bought a radon detection kit to check their home's levels of the odorless, ground-emitting gas. The test confirmed all was safe.
For Judy Stephens, the symptoms began with back pain that would migrate to her upper right leg.
"It was the classic picture of, say, a pinched nerve," said her son, Thad Stephens, an emergency room physician in Johnson County. He arranged for a CT scan, then a full body scan. The discovery of a tailbone tumor that had spread from the lungs stunned the family.
"I was bitter, thinking of these little old ladies who smoked all their lives and never got cancer," Thad Stephens said. "Mom never did anything to hurt herself."
Having not once smoked, Judy Stephens at age 71 was told her lung cancer would claim her in three to six months. She battled bravely for 16 months, aided by an experimental drug called Tarceva, which has been found to help some female cancer patients in their post-menopause years.
Her death last October happened to coincide with new recommendations issued by the National Comprehensive Cancer Network, a professional medical group. The network for the first time called for lung cancer screening using low-dose CT -- but only for older, heavy smokers.
Judy Stephens' family could not help but wonder how she got sick. Suspicion turned to the basement of her Shawnee home, where she spent time at the sewing machine stitching dresses for her doll collection.
Could she have absorbed too much radon over the years? Did ceramic dust that would accumulate when she made and repaired dolls drift into her lungs? Was it secondhand smoke from her husband's habit, which he gave up more than 30 years ago?
All speculation. No answers.
"We've done such a good job with smoking cessation messages, people think it's the only way of developing lung cancer -- and that's a dangerous assumption," said Vidaver of the National Lung Cancer Partnership. "You need to listen to your body."
Gall did just that, and her primary care physician reacted quickly in scheduling a chest X-ray that revealed suspicious shadows.
Experts caution that chest X-rays and CT scans shouldn't be relied upon routinely and their ability to detect lung cancer is far from foolproof. Your cough in most cases is just a cough, but one that persists for weeks should be brought to a physician's attention, whether you smoke or not.
"Whatever I can put forward to raise awareness and help prevention, maybe that's what I've been chosen to do," said Gall, who works for the Community Blood Center.
She noted that her profession is to help people in life-threatening situations.
And suddenly, out of the blue, those people include her.
To reach Rick Montgomery, call 816-234-4410 or send email to firstname.lastname@example.org.
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