Caring Ambassadors: http://LungCancerCAP.org
Roberta “Birdie” Urban struggles to catch her breath sometimes. Understandable, given that she’s missing a lung and several ribs. It’s a wonder that she’s drawing breath at all.
She beat the odds. Seven years ago, she underwent drastic surgery to remove lung cancer. Only 15 percent of lung cancer patients live five years past their diagnosis.
“You just do what you’ve got to do,” said Urban, a 64-year-old Vancouver resident. “Never ever, ever give up.”
Now she applies that motto to her volunteer work for Caring Ambassadors, which advocates for lung cancer patients. But she finds it difficult to rally support.
People perceive lung cancer as a lost cause and often blame sufferers for their disease rather than responding with empathy and dollars.
Lung cancer kills more people — 157,300 a year nationwide — than all other cancers, yet it receives much less funding for research and advocacy than other cancers, particularly breast and prostate.
Last November, Caring Ambassadors hoped to raise money through a bowl-athon at Big Al’s. About 80 people attended the event, which took in about $1,600, Urban said, just enough money to cover costs. By comparison, Southwest Foundation’s Pink Power fundraisers in 2007 and 2008 raised $4 million toward building the $5.7 million Southwest Kearney Breast Care Center.
“It’s the stigma of lung cancer,” Urban said. “It’s like we’re invisible.”
Fighting for change
Urban is not about to give up. She’s already working on another bowl-athon planned for Nov. 13. She’s approaching companies about sponsorships earlier this time to avoid the reply she heard so often last year: “We already gave to Susan G. Komen.”
“We just don’t get the support breast cancer does,” Urban said. “The minute you say lung cancer, people think cigarettes. Everyone wants to look at you and blame you, even if you didn’t smoke.”
Survivors are hesitant to step forward as advocates, she said. Many are not in a position to take up the cause. The median age of lung cancer sufferers is 70. And there are simply too few survivors because lung cancer is so deadly.
“It’s a phenomenal killer,” said Dr. Christopher Jackson, a Vancouver surgeon who frequently operates on lung-cancer patients.
Lung cancer strikes a significant number of people who never smoked. Studies show cigarette smoking is responsible for about 90 percent of lung cancer deaths in men, and 75 percent to 85 percent in women. That means that an estimated 15,000 to 23,000 nonsmokers die of the disease a year.
“We’re far more aware that there are never-smokers with lung cancer,” said Dr. Alan Sandler, an Oregon Health & Science University professor nationally recognized for his work on lung cancer. “Probably up until this decade, we really didn’t pay as much attention to them as we should.”
Lung cancer patients who never or barely smoked tend to do better in treatment and live longer — about two years past diagnosis as opposed to eight months or a year, he said.
That’s in part because smokers’ cancer cells have more genetic mutations, Sandler said. But there’s another factor.
“The very process that causes the lung cancer — primarily smoking — also deteriorates someone’s breathing capacity and the ability to tolerate a curative operation,” Jackson said.
Urban said she smoked briefly as a teenager. Lung cancer didn’t even cross her mind before she was diagnosed in 2003.
“I thought I had a bad cold,” she said. A sharp pain woke her up in the middle of the night. Her doctor ordered a chest X-ray and then a CT scan. A biopsy and positron emission tomography scan revealed that she had large-cell carcinoma, and that the cancer had spread outside the lung.
“I could have looked at it as a death sentence. I looked at it like, ‘I’m going to get through this,’” Urban said. “I never let it get me down. I never thought about dying.”
Personal battle
She underwent chemotherapy and radiation, which shrunk the cancer. She wanted the rest cut out, but doctors told her surgery would only kill her.
Then she found Jackson, who was willing to try.
“I said, if it doesn’t work, I don’t want to wake up,” Urban recalled.
The tumor had formed tentacles that wrapped around her ribs. In a 9½-hour surgery at Southwest Washington Medical Center, Jackson removed 5½ ribs, part of Urban’s chest wall and her entire left lung.
“She was one of my career landmark cases,” Jackson said. “That was an absolutely formidable operation. She got lucky in several ways.”
Surgical removal of lung cancer improves survival, but the cancer has to be caught early.
“Unfortunately, many patients are inoperable by the time they get to see a surgeon,” Jackson said.
Unlike mammograms for breast cancer, there’s no agreement about the best screening method for lung cancer.
Chest X-rays, low-dose computed tomography, and testing of blood or sputum are promising, but studies have yet to sort out the most effective screening.
“We’ll have the results of two large screening studies in the next year or two,” Sandler said.
On the upside, lung cancer “is not necessarily a uniformly fatal tumor any more,” said Dr. Charles Thomas, chief of radiation medicine at OHSU in Portland. He has worked with Urban and with Caring Ambassadors on their education efforts.
Thirty years ago, a person with cancer that had spread from the lung could expect to live only four to six months. Now people can expect to live two to three times as long, Sandler said.
“Active participation in clinical trials is the only way we’re going to move forward in advancing toward cure for cancer,” he said. Plus, patients who participate in trials tend to live longer.
Advancements in treatment are “really exciting,” Thomas said.
“We now have more options to selectively treat the tumor even after it’s spread, to reduce some of these tumors to chronic disease” — similar to diabetes or heart disease — which patients can live with for years, Thomas said. “There’s opportunities to make significant impacts to reduce mortality.”
Urban hopes so. Now that she’s no longer fighting the disease in her own body, Urban hopes to fight the stigma of lung cancer and raising money for research and patient support.
She won’t let anything slow her down. Because she’s missing ribs, she can’t bend over to clip her own toenails. Her heart has migrated under her arm. But she remains active. She volunteers at Legacy Salmon Creek Medical Center and enjoys gardening, quilting and traveling to watch her grandchildren play in sports tournaments.
“I feel better than I ever felt,” Urban said. “I have a different outlook on life. Nothing bothers me anymore.”
