Amanda Nerstad was 38 and had just moved from Chicago to Knoxville with her two children. She went out for a jog and suddenly felt out of breath. Something seemed off.
A friend had recently had walking pneumonia, and Nerstad thought she might have it too. She went to the hospital and learned she had stage 4 lung cancer. She was given between 2 weeks to 9 months to live.
“It was a huge shock,” Nerstad says. “Cancer doesn’t run in our family, and I’m a nonsmoker.”
Nerstad underwent comprehensive genomic testing. It turned out she had a mutation within the anaplastic lymphoma kinase (ALK) gene. She received a targeted treatment in the form of a chemotherapy pill and has defied the odds of her initial prognosis.
Nerstad still takes the pill every day and has been living with cancer for 4 years.
“For now, I’m winning,” she says.
Her diagnosis and survival go against common myths about lung cancer — like only smokers get lung cancer and only older adults have to worry about it.
Nerstad, who’s now involved with patient advocacy groups ALK Positive and LUNGevity, is concerned that the myth that lung cancer is a smoker’s disease not only prevents people from being tested but from donating to research.
A 2019 study found that lung cancer was one of the most underfunded cancers in proportion to how widespread it is.
Doctors are afraid these misconceptions prevent people from taking the appropriate steps to get screened and treated, mitigating their risks.
I spoke with a pair of oncologists to debunk common myths about lung cancer and discuss new advances in screening and treatment.
Myth #1: You have to be a smoker to get lung cancer
According to the American Cancer Society, smoking is a major risk factor for lung cancer. Still, 20 percent of U.S. people who die from lung cancer have never smoked.
Other risk factors include air pollution, secondhand smoke, and gene mutations like the one Nerstad had. Some of these risk factors are occupational hazards.
“People who work in the foundry, like my father used to, [are at risk],” says Dr. Roger Keresztes, a medical oncologist at the Stony Brook Cancer Center. “There used to be a high rate of cancers in the people who made the dials on watch faces and welders.”
Experts are still searching for answers on how to pinpoint the reason behind mutations.
“We don’t really know why those mutations cause cancers… they just kind of occur spontaneously,” says Keresztes, adding that the most common include EGFR, ALK, ROS-1, and BRAF.
Myth #2: If you have lung cancer, you’ll definitely die from it
Lung cancer can be deadly. It’s the leading cause of cancer death in men and women in the United States, according to the National Cancer Institute (NCI).
“Lung cancer has a bad rap for the right reason,” says Dr. Stefan Balan, chief of oncology services at Jersey City Medical Center.
Still, it’s not a death sentence.
The NCI reports that the 5-year survival rate is 59 percent if detected when the disease is still in the lungs (localized). The problem is that only 17 percent of cases are diagnosed at this stage.
Unlike breast cancer where a self-examination may reveal a lump, lung cancer is harder to detect in the early stages.
“You don’t normally feel your lung,” says Keresztes. “You don’t have nerve endings inside your lung. Unless something grows and touches the chest wall, you won’t feel pain. Unless it breaks into a blood vessel or air pipe, you won’t see blood. It can grow without causing any symptoms.”
Advances in treatments give doctors hope that they’ll be able to save more lives. In 2015, the FDA approved immunotherapy to treat lung cancer.
“The way immunotherapy drugs work is that they allow the immune system to recognize the cancer as something that doesn’t belong there,” says Balan.
Myth #3: People under 60 don’t get lung cancer
Though the risk of lung cancer does increase with age, there were still more than 30,000 new diagnoses in 35- to 39-year-olds in 2017, per CDC data.
Because of this myth, young people are less likely to be screened or call a doctor with symptoms.
“Age becomes a risk factor in smokers in particular because the longer you are exposed, the higher the risk becomes,” says Keresztes. “But respiratory symptoms should always be taken seriously, especially in the age of COVID-19.”
Myth #4: I have lung cancer. I might as well keep smoking
“Even if you survive lung cancer, there is a risk that those who continue to smoke will develop cancer [again],” says Balan.
Keresztes notes that quitting smoking can also help lower the risk of developing other forms of cancer.
“Smoking increases the risk of a number of other cancers including mouth, throat, esophagus, pancreas, kidney, and certainly bladder cancer,” he says.
Myth #5: Smoking weed definitely doesn’t cause cancer
The jury is still out on this one.
Results from 6 case-controlled studies showed weak associations, but
Both Keresztes and Balan agree your best bet is to avoid smoking cannabis.
“I don’t know of any smoking that is safe,” says Balan.
Myth #6: E-cigarettes are safe
In recent years, vaping has become both a trend and a hot topic, but the idea that e-cigarettes are safe is misleading.
According to a 2018 article, vaping is less harmful than cigarettes but still poses a risk for lung cancer.
“[An e-cigarette] is an aerosol that contains particles of nicotine and other substances known to cause cancer,” says Balan.
Even if the risk is lower than cigarettes, it’s still detrimental to your health.
Early detection can save lives, but it can be hard to pinpoint symptoms. Still, there are some you should never ignore.
“Early lung cancer usually has no signs at all,” says Keresztes. “Once it becomes large enough to affect the major airwaves, it can cause a cough, shortness of breath, or a bloody cough.”
Because early symptoms are often nonexistent, it’s best not to wait until you’re symptomatic to be screened for lung cancer if you fall into a high-risk group.
- have a history of heavy smoking (defined as a pack per day for 30 years)
- are current smokers or have quit in the past 15 years
- are between the ages of 55 and 80
Recently, the U.S. Preventive Services Task Force suggested lowering the age to 50 and defining heavy smoking as a pack per day for 20 years.
The screening process involves a low-dose CT scan. The path forward for a patient depends on the findings.
“If there’s nothing, there’s nothing,” Balan says. “If there’s a nodule, it needs to be followed.”
It could be a benign scar from the flu or it could be cancerous, he adds.
Smoking isn’t the only risk factor for lung cancer. Gene mutations and exposure to air pollution and secondhand smoke are among other reasons people are diagnosed.
Doctors recommend against smoking of any kind, including e-cigarettes and cannabis, though there isn’t much definitive data at this time about cannabis use and lung cancer.
The best way to increase survival rate is early detection, but lung cancer symptoms often don’t appear until it’s spread to other organs.
People at high risk for lung cancer should be screened with a low-dose CT scan even if they aren’t showing symptoms.
Beth Ann Mayer is a New York-based writer. In her spare time, you can find her training for marathons and wrangling her son, Peter, and three furbabies.