Bringing Lung Cancer Out of the Closet

There is no doubt in the minds of lung cancer survivors that the disease carries a stigma unlike other cancers.

"Lung cancer is definitely treated differently," says lung cancer survivor Lori Hope. "You don't ask a heart attack victim what their cholesterol is or how much meat they eat. You don't ask someone with diabetes how much sugar they ingest. But the first question people ask: Did you smoke?"

Lori Hope was "accidentally diagnosed" with lung cancer four years ago. She was undergoing a CT scan of her abdomen for another illness, and the radiologist picked up a spot on the lower lobe of her lung. And yes, she smoked but had quit more than two decades ago. Still, she blamed herself.

"I felt awful that I had smoked. Quitting was the most difficult thing I had ever done. I felt horrible that I had cancer anyway, and the thought that I had caused my own cancer was almost too much to bear."

Because Hope's cancer was caught early, it was treatable. She's one of the lucky ones. Currently, only 15 percent of patients diagnosed with lung cancer live longer than five years.

Hope gets annual CT screenings and believes they are key to her long-term survival. She applauds this latest study that links early CT scans to a higher survival rate. "That is phenomenal," she says, "astounding. ... I hope it will open people's eyes and engender compassion more than judgment."

Lung cancer advocates believe the perception that lung cancer is a self-inflicted disease is part of the reason it receives less funding for research and early detection than other cancers. "There is a blame the victim mentality," says Laurie Fenton, at the Lung Cancer Alliance. "It's viewed as a punishment, for crying out loud. ... If you smoke, it's your problem. Deal with it."

When it comes to funding, lung cancer ranks at the bottom of the major cancers. Breast cancer is at the top, with $570 million, followed by prostate and colon cancers. Lung cancer gets $250 million, although it kills more people than the other three cancers combined.

"The vast majority of breast and the vast majority of colon cancer is found early and therefore have favorable outcomes," says Dr. James Mulshine, at the National Institute of Health. "The vast majority of lung cancer is found late. At least three-fourths of lung cancers at the time of initial diagnosis have already spread beyond the lung."

That's why lung cancer survivors embrace early CT screening as their best chance to catch the cancer early. "I was lucky the first time," says Shelia Ross. She was diagnosed with lung cancer at age 49, again inadvertently, by a stethoscope. They operated and removed two-thirds of the right lung and told her she was cured.

She continued to get chest X-rays, "but the problem was, the chest X-ray didn't pick up the cancer that was growing in my bronchus," she says. And nearly 10 years after her first diagnosis, her doctors told her she had lung cancer again. But this time, they gave her only "a couple of weeks to live." The surgeon tried a radical procedure on Ross, and she survived. Now she gets CT scans every year.

Ross calls chest X-rays "completely obsolete" and supports early CT screening for anyone at high risk of lung cancer, which includes her three daughters. They were all smokers in college, and were exposed to their mother's smoking. And now, they have a family history of the disease. So when they each turned 40, Ross urged them to get CT scans. "It absolutely gave me the peace of mind. ... It's like an insurance policy. If it's caught early, they have a better chance to live."

Lung cancer advocates say "there are too few treatment options." Laurie Fenton, at the Lung Cancer Alliance, says it's a vicious circle. "Because it [the disease] is so lethal, few people live long enough to be advocates. ... There are fewer voices."

Survivors like Ross and Hope vow to use their voices loudly to heighten awareness and fight for more funding for early detection and treatment, and ultimately, a cure.

"Everyone deserves to live," says Hope. "Whether you smoked or didn't."