Amanda Nerstad talks about her need to not let her battle with cancer define her, at her West Knoxville home on Tuesday, May 9, 2017.
That pressure on her chest must be stress from moving back to Knoxville after 15 years in Chicago, Amanda Nerstad thought.
When it didn’t go away, “I thought maybe I had walking pneumonia,” Nerstad said.
But after 10 days in the hospital, Nerstad — then 39 years old — ended up with a diagnosis she never expected: Stage 4 lung cancer.
Nerstad was young, healthy, active with two small daughters. She’d never smoked. She had no family history of cancer.
She was dumbfounded.
“At the time, I didn’t realize that, clearly, any lungs can get lung cancer,” Nerstad said.
Higher than average rates
Among U.S. states, Tennessee has the fourth highest rate of lung cancer, according to a new “State of Lung Cancer” report from the American Lung Association, and the Tennessee Cancer Consortium reported last year that lung cancer incidence rates for both white and black men in all Tennessee health regions are between 50 percent and 100 percent higher than the national rate.
Lung cancer is the primary reason Tennessee’s overall cancer mortality rate is so high compared to national rates, the consortium said.
“It’s just a terrible killer,” said University of Tennessee Medical Center pulmonologist Dr. J. Francis Turner. “Every day in the United States, it’s the same as a fully loaded 737 jet crashing — 433 people each day die of lung cancer.”
Smoking is still the most common cause of lung cancer, and more than 20 percent of Tennessee adults smoke — also higher than the national average. The American Lung Association’s 2018 State of Tobacco Control report gave “F” grades to Tennessee for tobacco prevention program funding; tobacco taxes; access to tobacco cessation treatments; and tobacco 21 laws. It graded Tennessee “C” for smoke-free air.
Tennessee — and East Tennessee, in particular — also has higher levels of radon, a colorless, odorless gas that can seep into homes and buildings from soil. Some studies have pegged radon as the second leading cause of lung cancer, behind smoking. In houses where radon is present, systems to lower the levels of the gas can be installed. The Tennessee Department of Environment and Conservation also offers a radon program with information and home testing kits.
In addition, Turner said, environmental exposure has an effect — including air pollution and workers’ exposure to carcinogenic dust in the mining industry, or to asbestos or even a large amount of secondhand cigarette smoke in other jobs.
Part of the reason lung cancer has a lower survival rate overall is that it’s typically diagnosed in later stages, often after it’s spread to other organs.
In Tennessee, fewer than 20 percent of cases are caught early when survival can be more than 50 percent. More than 46 percent of lung cancer cases in Tennessee are not caught until a late stage, when national survival rates are 4.5 percent.
In its early stages, lung cancer can sometimes be treated with surgery, before it spreads. In Tennessee, about 20 percent of lung cancer patients are surgically treated.
Screening for lung cancer with annual low-dose CT scans among those at high risk could reduce the lung cancer death rate by up to 20 percent, simply by finding it earlier.
But it’s not that common — in some rural places, because access to the screening is lacking, but in most places, because awareness is low, said oncologist Dr. Richard Grapski, who practices at hospitals in the Covenant Health system,
“It’s been real slow to catch on,” Grapski said. “Lung cancer screening saves more lives than mammography.”
Grapski has been actively screening patients for more than two years.
“We see about two-three abnormal CT scans a month,” he said.
Catching a lesion when it’s smaller than 1 inch means it could be surgically removed — with a 90 percent cure rate, he said. A 2-centimeter tumor could be successfully blasted in five radiation treatments.
“But half of lung cancers present with Stage 4 disease,” and after the cancer spreads, the person begins showing symptoms such as weight loss, and survival odds are grim, Grapski said. “We’re getting better drugs for this, but we want to catch people when the tumor is a centimeter in size instead of 10 centimeters.”
Nerstad’s lung cancer, it turned out, was caused by a genetic mutation: her anaplastic lymphoma kinase gene is broken and attached to another gene, called “ALK-positive.” Before starting her on traditional chemotherapy, her oncologist called for genetic testing, which has become increasingly common over the past decade.
ALK-positive cancer changed Nerstad’s treatment plan — and her survival rate.
“I went from the surgeon saying I might have two weeks to nine months to live, to then all of a sudden the doctor calls and says, ‘You’ve hit the lottery,'” she said.
Now, 18 months after her diagnosis, Nerstad takes a twice-daily therapy that targets her specific gene mutation. It’s responded well to the treatment, she said.
Radiation oncologist Dr. Nilesh Patel of Tennova Healthcare said such targeted therapy is one of many recent advances in treating advanced lung cancer.
More focused radiation systems allow treatment of the tumor while sparing surrounding tissue.
Immunotherapy drugs can stimulate the body’s own immune system to recognize certain types of cancer cells, based on markers, as invaders and fight them.
And doctors can match a tumor’s “blueprint” to certain types of medications to better the chance of a good response.
“We can essentially customize treatment based on someone’s cancer,” Patel said.
Such treatments are lengthening patients’ long-term survival chances as well as increasing their quality of life, leading doctors to hope lung cancer could someday be treated as a survivable chronic illness.
But they’re not increasing the “cure” rate. Over time, the cancer can evolve and “outsmart” the treatments designed to eradicate it.
“A tumor’s No. 1 goal is to grow, grow, grow, grow, grow,” said Dr. Christine Lovly, assistant professor of medicine and co-leader of translational research and interventional oncology at Vanderbilt University Medical Center in Nashville. Eventually, “the tumor will find a way to get around the drug.”
A need for research
Nerstad takes the second-generation formulation of the drug that targets her ALK-positive cancer.
“I’ll eventually gain resistance to this type of medicine, and then I’ll go on to the next generation pill — that’s how these mutations work,” Nerstad said.
So she has a vested interest in making sure researchers are coming up with future generations of her medicine. Though among the most deadly cancers, lung cancer receives significantly less funding than breast, prostate or colorectal cancer.
And Nerstad’s type of lung cancer is fairly rare. That’s why she and other members of a 900-strong online ALK-positive support community have, through the lung cancer-focused nonprofit group LUNGevity, collectively raised $400,000 to fund two yearlong grants for a researcher working on ALK-positive cancers and are now taking applications. Nerstad’s husband, Gary, and daughters, ages 5 and 8, raised money through a lemonade stand and a dance party.
“We realized we’ve got to change these statistics,” she said.
Lovly is one of those researchers working on learning why 15 percent of people develop lung cancer, despite never having had smoked.
“We don’t really have a good explanation,” Lovly said.
Nerstad, for example, wasn’t born with the mutation; “it developed while she was alive,” Lovly said. “The overwhelming number of cancers are not due to mutations you’re born with.” Most of those mutations are found only in the tumor — and only in the past decade or so have doctors been able to detect them.
Lovly’s work is looking at what causes the mutations, as well as how to better target them.
Still, “there’s such a stigma around lung cancer,” Lovly said. “The first question people with lung cancer get asked was, ‘How much do you smoke?'”
Research that’s led to doctors not treating all lung cancers the same is “exciting,” UT Medical Center’s Turner said.
“It’s still a terrible disease, and it’s not something you want to have — I don’t want to sugar-coat it,” Turner said. “But we’ve got some real hope for the first time, not only in terms of treatment, but with screening, if we find it early.”
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