Lung cancer is an infuriating disease.
It kills more men and women than any other cancer yet funding for new therapies (or a cure) lags far behind other top killers. There’s an effective screening test for the disease, yet the people most at risk barely know about it.
Why does lung cancer continue to receive such little recognition and so few resources? One reason might be the murky misconceptions that surround it.
We tapped a handful of lung cancer patients and Dr. Bernardo Goulart, a physician-scientist with Fred Hutchinson Cancer Research Center, for insights into what the public — and sometimes even doctors — are getting wrong about a disease projected to kill nearly 155,000 Americans this year alone.
Here are their top takeaways.
Yes, most lung cancers can be linked to smoking, but it’s hardly the sole cause of the disease. According to the American Cancer Society, about 20 percent of Americans who die of lung cancer (30,000 people) have never smoked or used any kind of tobacco.
Radon gas, the leading cause of the disease in nonsmokers, accounts for about 21,000 lung cancer deaths each year. Secondhand smoke kills around 7,000 more. Asbestos, diesel exhaust, soot, previous radiation therapy and air pollution can also drive the disease, as can certain genetic mutations.
“It’s a common misconception that it’s only a disease of individuals who smoke,” said Goulart, a Hutch health economist with the Hutchinson Institute for Cancer Outcomes Research and lung cancer oncologist with Seattle Cancer Care Alliance, Fred Hutch’s clinical care partner. “Many patients and even many physicians don’t even think about it when there’s no smoking history, even when there are obvious symptoms like weight loss or coughing up blood.”
The late neurosurgeon Paul Kalanithi, author of “When Breath Becomes Air,” had symptoms for months before he went on to be diagnosed with metastatic lung cancer, Goulart said. By then, the cancer was too advanced.
“Worldwide, 25 percent of lung cancer patients never smoked,” said Seattle stage 4 lung cancer patient Janet Freeman-Daily. “The only thing I ever smoked was salmon.”
The bottom line: if you have lungs, you can get lung cancer.
Even if smoking results in a lung cancer diagnosis, can you truly say that the person brought it on themselves?
Nicotine is highly addictive and smoking disproportionately affects the most vulnerable among us, including minorities and individuals who lack education or resources. People with mental health issues are particularly susceptible.
“Many societal, cultural and economic factors influence an individual’s decision to smoke,” Goulart said. “And the addictive properties of tobacco make it difficult for them to quit after they start. Most people interpret lung cancer as self-inflicted when in reality, it’s not. The decision to smoke is not an individual decision.”
If you do smoke and need help quitting, Fred Hutch researchers are happy to help. Read about their work here.
Be mindful of these lung cancer symptoms
Lung cancer patients are often diagnosed late, after the cancer has metastasized to other parts of the body. Some people feel shame and guilt about smoking so they don't go to a doctor when they first notice symptoms. Other times, symptoms may not appear until the disease is advanced. What should you watch for?
If you have any of these symptoms, talk to your doctor. For more information on lung cancer screening, click here.
Most of us know that mammograms screen for breast cancer and colonoscopies can find precancerous polyps and early colorectal cancers. But not as many know that low-dose CT scans, or LDCT, can detect early stage lung cancer, even though the American Cancer Society and U.S. Preventive Services Task Force both recommend scans for high-risk individuals 55 and older. (Their complete screening criteria can be found here and here.)
“There’s definitely a lack of awareness that we can now detect lung cancer earlier,” Goulart said. “Many lay people and even primary care physicians aren’t aware we can screen for it with the goal of detecting the disease at an early stage when it’s more likely to be curable.”
Recent studies show only about 3 percent of eligible adults receive LDCTs. HICOR health economist Dr. Josh Roth delved into why these scans are underutilized in a study earlier this year that asked 20 participants, all current or former smokers, their motivations for screening. The majority were screened because a trusted doctor had recommended it. Prior to that, most had no idea they were even eligible for it.
The American Lung Association has a quick online test you can take to see if screening is recommended for you. If you qualify, most health insurance companies and Medicare will cover the cost.
While some people are in the dark about screening, others imbue it with extraordinary power.
Fred Hutch public health researcher Dr. Jaimee Heffner, who studies tobacco cessation, interviewed 83 smokers who’d undergone LDCT scans at one of four Veterans Affairs medical centers about lung cancer screening and smoking. Results showed that almost 40 percent of participants believed lung cancer screening somehow cut their chances of getting lung cancer. Nearly half thought a LDCT scan was just as effective as quitting smoking as a way to reduce death.
"Our results illustrate just how wide a gap exists between the expectations and the reality of lung cancer screening benefits among some groups of current smokers," Heffner wrote in the paper.
Fatalism is a common theme in lung cancer, to the point that many patients believe that any diagnosis — even early stage — means the end is nigh.
“Many assume that lung cancer is incurable by definition,” Goulart said, citing multiple cases of stage 1 or 2 patients assuming they’ll have only a few months to live “when in reality there is a good chance we can cure it with appropriate treatment.”
Even with stage 4 disease, Goulart said there are life-extending treatments that “increase survival and improve the symptoms of the disease.”
Tina, a 49-year-old lung cancer patient from Charlotte, North Carolina, who declined to give her last name due to stigma, said the assumption that a lung cancer diagnosis is an “immediate death sentence” is out of touch.
“Research has brought new medications that are more effective and less toxic,” she said. “They’ve also improved side-effect management. My stage 4 lung cancer diagnosis was in September 2014, and I live life with joy.”
Cancer is a disease of aging, so we commonly associate it with the elderly. Or at least those over 60. Another common myth.
“It’s a misconception that someone who is young cannot get lung cancer,” Goulart said. “Lung cancer in individuals younger than 40 is rare, but it happens.”
He and colleagues at SCCA are currently treating a number of patients under 40, some even in their 20s.
“Usually, these lung cancers are driven by a mutation; they’re not associated with tobacco but with a single oncogene mutation [a cancer-causing change to one gene] such as EGFR or ROS1, and we do have therapy that can fight it.”
Despite funding gaps, lately there’s been good progress. Early stage lung cancer patients who undergo surgery now have effective platinum-based chemo combinations, and metastatic patients have new tools like oral targeted therapies and immunotherapies. And many of these newer options have fewer toxic side effects.
Even better, more discoveries are coming.
Scientists continue to identify new genetic mutations and create (or dust off) pharmaceuticals that can target them. One new drug, lorlatinib, was just cleared by the Food and Drug Administration for ALK-positive metastatic non-small-cell lung cancer.
“Hopefully, these new drugs will be available in a few years to treat even a larger fraction of patients,” Goulart said. “It’s all about getting the right drug to the right patient.”
That doesn’t mean everybody who has their tumor sequenced will find a driver mutation that their doctor can target with a new drug, Goulart warned. It happens, but usually in never-smokers.
In the meantime, lack of access, money, insurance and/or education are keeping large numbers of patients from getting just the basic standard of care.
Goulart and HICOR colleagues Roth and Dr. Scott Ramsey charted the progress made in lung cancer over the last 25 years and found the one-year survival rates and three-year survival rates have actually doubled, from 14 to 28 percent and from 3 to 6 percent, respectively.
But only about 40 percent of the patients in their study had received “systemic platinum-doublet therapies,” the standard of care. More than 60 percent, for whatever reason, had not.
In other words, there’s been improvement but there is a still a long way to go.
“The future is brightening for these patients,” they wrote, but “efforts are needed to educate patients and clinicians about the changing landscape of [lung cancer] treatment.”
Read more about lung cancer research at Fred Hutch.
Diane Mapes is a staff writer at Fred Hutchinson Cancer Research Center. She has written extensively about health issues for NBC News, TODAY, CNN, MSN, Seattle Magazine and other publications. A breast cancer survivor, she blogs at doublewhammied.com and tweets @double_whammied. Email her at firstname.lastname@example.org.