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SANDY -- Lung cancer is the No.1 cancer killer in the United States and in Utah, but it's not always talked about as much as other cancers because there's a belief that people brought the disease on themselves by smoking. The reality is, lung cancer is NOT just a smoker's disease. But if you don't smoke, that diagnosis can be a shock.
Kathy Egan was on an LDS mission to South Africa when she started getting pain in her shoulder. After returning to the states, she saw a doctor.
"I found from the X-rays that my shoulder was really fine, but I had a mass in my lung," she says.
The mass was stage-four lung cancer, which had spread to her clavicle. The cause was baffling.
With tears in her eyes Egan says, "I've never smoked in my whole life. I don't ever remember even touching a cigarette. To hear the word cancer isn't something that any of us ever want in our lives, but to hear lung cancer...."
The statistics may be surprising: nonsmokers like Egan make up 10 to 15 percent of lung cancer patients.
Dr. Wallace Akerley, a medical oncologist with the Huntsman Cancer Institute, says about nonsmoking patients, "They feel that they've been wronged in some degree in the sense that, ‘I've done everything right and I still ended up with this cancer.'"
The possible causes of nonsmoker lung cancer include being exposed to second-hand smoke, asbestos and radon -- a radioactive gas in the earth that can leak into homes. Dr. Akerley says every home should be tested for the gas. Some also believe estrogen may play a role and genetics could be a large factor.
In Egan's case, she wasn't exposed to a lot of second-hand smoke and she tested her home for radon, but it didn't show dangerous levels.
"I believe it was my genes and I was susceptible," she says.
Genes do play a role in the makeup of non-smoker lung cancer. Dr. Akerley says doctors have just recently learned 50 to 60 percent of nonsmokers with the disease have a genetic mutation in the tumor and another 25 percent have a separate gene mutation. The good news is, targeted medicines for the mutations are delaying tumor growth.
"There's two different drugs available now," he explains. "One for one mutation, and the second one is not on the market but we have clinical studies."
In December the Huntsman Cancer Institute will begin a clinical trial using an IV form of the drug for the second mutation, the less common one. But the center already utilizes the drug for the first, more common mutation, and doctors have seen good results.
"When a patient has a gene mutation and takes this new gene-directed pill, it can work a long time," Dr. Akerley says.
The average survival for lung cancer is a year after diagnosis. But the average survival for nonsmokers with a gene mutation is now two years. And Dr. Akerley has seen patients living several years beyond that.
"I now have patients with nonsmoking lung cancer who have been on the medication for five years. And in my 30 years, I've never had patients who lived for five years with lung cancer," he states.
Egan had the more common gene mutation and took the targeted drug as part of a clinical trial. Within nine weeks her lung tumor shrunk by 80 percent. She took the medicine for a year and a half. Then her tumor began to change and Dr. Akerley recommended she begin chemotherapy. She has had three rounds of chemo but still feels healthy and keeps a positive attitude.
"There are researchers out there desperately working to put the dots together to be able to stop this," she says.
Egan feels fortunate that her shoulder pain sent her to the doctor's office, where an X-ray detected the tumor. Otherwise she would never have known she had the disease. In fact, lung cancer in nonsmokers can be very tricky to diagnose because the symptoms don't obviously point to lung cancer. Those symptoms include a cough, asthma-like symptoms, weight loss and pain, which indicates that the cancer has spread. Other times patients have no symptoms. Because of that, nonsmoking lung cancer is usually diagnosed at a more advanced stage than lung cancer in smokers.
If you have any concerns, Dr. Akerley says it's best to visit your doctor. For more information or to answer any questions, you can call the Huntsman Cancer Institute's Cancer Learning Center at 1-888-424-2100
Story written with contributions fromTonya Papanikolas.