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Diagnosed with Lung Cancer, Non-Smoker Looks for Cause

CEDAR HILLS — From the moment you meet Valerie Scott, it's hard not to smile.

"Once you get on the course it's pretty. Like I golf!" she said, laughing. "I just look!"

On the kitchen counter beside her, sit pictures of her family: Four children, two still living at home, and a new grandbaby - her first.

"I'm 53, and I used to think that was old," she said. "Now I'm thinking that's really young, you know?"

Scott's love for her grandson is evident. Her children joke she replaced her favorite décor, leopard print, with something new. They call it baby.

"He is my life, and I think I just barely got here," Scott said. "I want to get to know him. I adore him. And then I think - you know, you let your brain go there — and you think, ‘The older he gets, the more he's going to miss me if I go.' And I hate thinking about that."

In May 2012, she went to the Emergency Room with stomach pains. She says doctors did a CT scan, and found something she never expected: Spots on both her lungs.

"Spots sounds innocent, you know? They didn't say, ‘You've got these terrible things.' It's just, you've got spots," she says. "I never dreamed of what it would be."

The diagnosis was stage four lung cancer, and it had spread to her brain. Scott had never smoked. Never even had a symptom, like a cough. She says doctors gave her a year to live if she chose treatment, and only six months if she opted out.

"I said, well, that's not going to be me," she said. "I'm going to beat that. I said, 'I feel too good.' There's no way I'm going to be dead in a year."

Scott says she asked to start treatment, right away, but doctors made her wait. She said they first needed to check for a genetic mutation found only in non-smokers with lung cancer.

"It's funny how your prayers change," she said. "Don't let it be cancer. Don't let it be cancer. Please let me be a mutant. Please let me be a mutant."

Scott's prayers were answered. She was a mutant, and it was a good thing, because now instead of chemotherapy she only has to take a pill. Now, she's on a mission to answer one question: how?

"Once I found out that it was cancer and I was waiting for the tests to come back, then I started thinking, ‘I haven't smoked,' " Scott said. "And radon gas was the only other thing that I'd heard of."

Radon. A naturally-occurring gas that comes from the decay of uranium in soil and water. It seeps up through the ground and collects in buildings. You can't see it, smell it or taste it so it's impossible to know it's there until you test for it.

The Environmental Protection Agency estimates it kills at least 20,000 people every year. That makes it the second leading cause of lung cancer after cigarettes — more dangerous than second-hand smoke.

"Twenty-thousand deaths. I mean, that's just huge," said Dr. Wallace Akerley, Director of Thoracic Oncology at Huntsman Cancer Institute. "That's probably the eighth or 10th most important cause of cancer death in the U.S. at this time."

Akerley is a leading expert on non-smoking lung cancer. In April 2012, he delivered a presentation on radon during the EPA Region 8 Stakeholders Radon Meeting in Salt Lake City. In September, he spoke about radon at the 2012 Cancer Awareness Expo at the South Towne Expo Center.

"We know radiation causes cancer," he said during that latter presentation. "Well, radon is radiation and it causes cancer."

When asked during an interview if there was any way to tell if radon caused lung cancer, Akerley told KSL, "Well, not yet. That's where we're hoping to go."

Until now, researchers like Akerley have relied on case studies to link radon to lung cancer. They studied radon exposure in mine workers, women in Iowa, and in different species of animals. All studies provided strong evidence that radon does, in fact, cause lung cancer. Now Akerley is trying to find the final genetic link.

"The piece that we're looking for and would like to be able to understand - can we relate radon exposure directly to these mutations that we're seeing?" he said. "It seems obvious that there is a relationship, but we're just starting to do that."

Akerley is doing his research in Utah for several reasons. First, he says he will use a vast genealogical database, called a familial database, to look for genes passed down through families and then genetic mutations caused by things like radon.

Second, Utah's Department of Environmental Quality lists 17 counties - including the state's most populous areas — are in the red zone, officially called Zone 1. The EPA says those areas are most likely to see high levels of radon gas.

And finally, Utah has the fewest smokers of any state in the nation, according to the Centers for Disease Control. Akerley says that translates into lower lung cancer rates and higher odds lung cancer in Utah could be caused by something other than cigarettes. Akerley says about half of all Utah lung cancer patients never smoked, compared to 15 percent in other states.

"It's just kind of a shame. These people come in, they know they've done everything right in their lives and lung cancer still shows up," he said.

"It hasn't really sunken in," Scott said. "I never wake up and think, 'I've got lung cancer.' "

Instead, she is getting to work. She wants to do a radon test on every home she ever lived, from California to Georgia. And she wants to make people aware; She's made her own lung cancer ribbons, and stickers that read "Lung Cancer: Not Just for Smokers."

She says she hopes to see her grandson graduate from high school, but knows that may never happen. So she's getting her affairs in order, writing a will, and enjoying every moment.

"Everyone says, ‘What's your bucket list?' I'm living my bucket list, you know?" she said, holding back tears. "My family. My kids. Every day. I don't want that to go to waste. And I just want to know that if it takes me tomorrow, that everyone knows I love them and I've enjoyed them. But you know, I'm fighting. If I go, it will be dragging and screaming. I don't, I don't want to go."

Read more here: http://www.ksl.com/?nid=148&sid=22905966