The doctors told Susan Smedley Gerber that her lung cancer wasn't caused by smoking but in many ways it didn't matter. She found herself facing the same stigma and same reactions that thousands of lung cancer patients fight in addition to their cancer.
"So much of the stigma that's connected with lung cancer is around smoking," said Smedley Gerber, who lives in Fitchburg with her husband and two children, 12 and 8. "When you are diagnosed with lung cancer that's the first thing you think of as a patient. It's the first thing other people think of whether it be the doctors, friends, family."
Lung cancer is the No. 1 cause of cancer deaths in the United States, killing more people than breast, prostate, colon, liver, kidney, and melanoma cancer combined. And the stark fact is that cigarette smoking causes 87 percent of lung cancer deaths, according to the National Institutes of Health.
Because it's considered self-inflicted, and because of successful and increasingly hard-hitting anti-smoking campaigns, the public isn't as sympathetic to lung cancer victims as it is to those who get other ailments. And advocates working to combat that negative image say it not only affects how society judges lung cancer patients but also cripples funding for lung cancer research.
Lung cancer gets a fraction of the funding that other major cancers do. The federal government spent $1,249 per lung cancer death in 2009 compared with $27,480 per breast cancer death, according to the Lung Cancer Alliance.
Now a Madison group is trying to fight that. The National Lung Cancer Partnership is holding a 5K run/walk Sunday to help support its research, education and awareness programs and encouraging lung cancer victims to tell their stories.
Regina Vidaver, the group's executive director, said this lack of funding indicates that society values the life of somebody with breast cancer more than the life of somebody with lung cancer.
"It's still somebody's mother or father or sister or brother. They need the same kind of emphasis on their disease as does anybody else. They are just as deserving," she said. "People think, 'Well, you did it to yourself, you smoked. So why should we spend money on research because if you just don't smoke, you don't get it.' That's a fallacy."
Ray Rickert woke up to that fallacy when his non-smoking wife, Jodi Lou, was diagnosed with lung cancer. She died from the disease in April 2008, leaving him to raise their 2-year-old daughter.
He said he held the stigma himself before he became directly impacted by the disease. "I waved it off like a lot of people do: 'Oh, I don't smoke so I don't have to worry about that' and didn't give it a second thought," he said.
Jodi lived for two years after the diagnosis and was 34 when she died. The second annual Jodi Lou Lung Cancer 5K Run/Walk drew more than 300 people in June.
Rickert calls smoking the "scapegoat of lung cancer" and said the lung cancer stigma goes back to the surgeon general's message that he's heard since he was a child, tying smoking to lung cancer. "When you hear something for 30 years it kind of sinks in and you start accepting it," he said. "But along with that message there should be something else saying, 'Hey, there are other causes, too.'''
In the United States, 10 to 15 percent of those diagnosed with lung cancer are like Jodi Lou Rickert and have never smoked at all. That's some 20,000 to 25,000 people every year. Another 50 percent are former smokers.
"So they've done what they can do to prevent this disease," Vidaver said.
If you eliminated the smokers from the equation, non-smoking lung cancer would be the seventh- or eighth-most common cancer in the United States, said Dr. Toby Campbell, a lung cancer specialist at the UW Carbone Cancer Center and assistant professor of medicine at the UW School of Medicine and Public Health.
Campbell said lung cancer patients who've smoked are particularly hard on themselves. It's not uncommon for them to say, "'Well, I've brought this on myself. Everybody knows that I did this.'"
Many also say they don't deserve to have somebody care for them, he said. "So I think the stigma starts at the patient level," Campbell said. "But certainly society impresses upon smokers that whatever they got they deserved."
In reality, that could not be further from the truth, Campbell said. "I personally am not perfect and I don't know anybody who is. We don't blame diabetics who have gotten obese and thus have diabetes or heart disease for the condition that they find themselves in. We don't blame people with heart disease for having high cholesterol and eating poorly."
Smedley Gerber was 32 when she was diagnosed with a rare carcinoid tumor found in her lung. Even though her doctors said it wasn't caused by smoking, her first thought was about what she did wrong. She immediately thought back to the three stressful years in her early 20s, when as a social worker just out of college, she had smoked a pack a day.
"You go through this process, you are trying to find out the cause," she said. "And the bottom line is for so many cancer patients, you're never going to know because researchers and doctors don't know. Lung cancer is one of those where there are so many unknowns, which is why there needs to be more research into treatments, prevention as well as cure."
Smedley Gerber is alive 12 years after her diagnosis because she saw a doctor after coughing up blood and her cancer was caught early. She considers it a miracle that she is cancer-free and feels the responsibility to spread the word and advocate on behalf of lung cancer victims.
"I sort of liken the lung cancer awareness movement to the AIDS community back in the '80s as far as stigma is concerned," Smedley Gerber said. "They've done a phenomenal job, and I think the way to change funding and change awareness is person-to-person -- those of us who have been impacted telling our stories to make it clear that it's not a one-dimensional disease."