Never-smokers at huge risk for fatal, late-stage lung cancer diagnosis

For never-smokers, people who have never smoked cigarettes or who smoked fewer than 100 cigarettes in their lifetime, a lung cancer diagnosis may seem far-fetched. 

And to their detriment, this misnomer means primary care providers and systems that govern screening eligibility too often negate lung cancer screening tests, which means when the disease is discovered, it’s often too late.

Lung cancer is one of the most common cancers in the world and the leading cause of cancer-related deaths in men and women in the United States, according to Yale Medicine. While cigarette smoking is by far the most common carcinogen, genetic and environmental factors are also formidable contributors to lung cancer in smokers, nonsmokers, and never-smokers.

Like other forms of cancer, lung cancer begins at the cellular level. It is the result of abnormal cells that reproduce rapidly and uncontrollably. The thoracic area, between the neck and the abdomen, houses vital organs like the heart and lungs, and includes the thoracic spine (the T1 to T12 vertebrae) which supports the rib cage and protects the spinal cord. Lung cancer can start in one area and spread or metastasize to other organs and bones.

Primary lung cancer starts in the lungs and consists of two types: non-small cell lung cancer (NSCLC) and small cell lung cancer (SCLC). These two types of lung cancer are named for how the cancer cells look under a microscope, and account for the lion’s share of the 230,000 newly diagnosed cases of lung cancer in the U.S. every year.

Smokers and nonsmokers (and never-smokers) are generally diagnosed with two different subtypes of NSCLC. More than half of lung cancers diagnosed in smokers are characterized by squamous cells. Under a microscope, squamous cells look like flat, thin, skin-like cells that line the lung’s airways.

Nonsmokers and never-smokers often present with a different NSCLC known as adenocarcinoma.  It starts in the mucus-producing glands in the outer part of the lung, progressing into the inner lung and the small airways called bronchioles. Adenocarcinoma has a different shape than other types of lung cancers, and is also most commonly diagnosed in younger individuals.

Daniel Boffa, M.D., a Yale Medicine thoracic surgeon, differentiates squamous and adenocarcinoma in this way: “If you are a smoker, you can think of your lungs as a bag of white marbles, and cancer is like putting a black marble in there. The type of cancer a nonsmoker gets is more like putting in black sand. Instead of a spot or a lump, it’s more like a hazy area. It’s more diffuse.”

For nonsmokers and never-smokers, studies suggest that a type of genetic mutation in the tumor — a somatic mutation –drives cancer development. According to the Cleveland Clinic, somatic mutations don’t pass from parents to their children and happen randomly or sporadically. Environmental factors like radon gas, secondhand smoke, air pollution, and cancer-causing agents in the workplace (exposure to asbestos, heavy metals, and diesel exhaust) can also lead to lung cancer.

The medical community tends to be more proactive with cancer screenings for smokers. However, screenings for nonsmokers and never-smokers are often overlooked, dismissed, or conducted way too late, leading to a late-stage diagnosis. Common symptoms, like coughing, wheezing, and swelling in the neck, are missed or misattributed. When race and age are factored in, late-stage diagnoses — or no diagnosis at all — tend to be fatal.

Geriatric projections for cancer diagnosis

Individuals over 65 have an 11 times increased cancer risk compared to those up to that age. Adequate treatment, according to evidence-based guidelines and data, is impaired by the underrepresentation of geriatric patients in cancer trials. Physiological factors like age-related organ functioning, comorbidities, and social drivers of health make late-stage and undiagnosed cancer far too common.

Comprehensive, quality geriatric care is imperative as the senior population, individuals 65 years and older, is projected to grow by 40% from 2020 to 2035, according to the U.S. Census Bureau. To put this into perspective, in 2022, 17% (58 million) of the U.S. population was 65 and older. By 2030, that demographic will increase by 6%.

There are several factors at play that prove counterintuitive to timely, logical cancer screenings for older adults — and especially for never-smokers.  According to the research, geriatric patients are “unnecessarily” screened for cancer. Based on nationwide surveys, at least half of older adults have received at least one unnecessary screening test for cancer in the past few years.

The United States Preventive Services Task Force (USPSTF) recommends that people at average risk of cancer get colorectal cancer screening through age 75, breast cancer screening through age 74, and cervical cancer screening through age 65.

Jennifer Moss, Ph.D., from Penn State College of Medicine, who led the study on unnecessary cancer screenings, said that people often aren’t aware of the potential harms from cancer screening. One is false positives that can lead to unnecessary follow-up procedures.

“But what we’re particularly worried about for older adults is the harm from the test itself. All of these screening tests are medical procedures that have potential side effects,” Moss said. This risk of harm is highest for invasive tests, such as colonoscopy.

She said studies have shown that the overall benefits of screening, such as detecting cancer earlier when it’s potentially easier to treat, outweigh the likelihood of harm in younger adults. However, the harms increase as people age.

Barry Kramer, M.D., M.P.H. retired director of the National Cancer Institute’s Division of Cancer Control and Population, doubles down on this theory. “For some tests, it can take 10 to 15 years, or even more, to reveal their benefits. The older you are, the less likely you are to reap those benefits,” he said. “As people grow older, the more they are likely to die of another cause before a cancer that might have been detected early on a screening test would have caused symptoms.” 

There’s an alternate point of view that the medical community shouldn’t ignore

In January 2023, the University of Michigan National Poll on Healthy Aging asked a national sample of adults ages 50 to 80 about their views on how decisions on cancer screening should be made. More than half of this demographic disagreed that “guidelines” should determine whether cancer screening decisions should be made based on life expectancy. Further, 7 of 10 (70%) of older adults polled said they do not believe it’s a significant problem if some older adults receive cancer screenings when guideline recommendations say they should not.

The advocacy group GO2 for Lung Cancer has long admonished that the current lung cancer screening system is not meeting the needs of the people it is supposed to protect. It excludes those most at risk and thus leaves too many people without early detection, which, quite frankly, could mean a death sentence.

GO2 states that for years it has “urged federal leaders to modernize screening criteria, so they reflect today’s science,” GO2 states on its website. “We have consistently recommended that the USPSTF and the Centers for Medicare and Medicaid Services (CMS) update screening eligibility in ways that mirror evidence-based guidelines from the National Comprehensive Cancer Network (NCCN) and the American Cancer Society.”

GO2 goes on to say that these approaches take a broader view of patient cancer risks and align with what patients experience and what clinicians see every day. This includes family history, radon exposure, occupational hazards, and environmental exposures.

For family members who have lost a loved one to lung cancer, the current screening guidelines are inherently flawed. I recently lost my mother, a never-smoker, who was never screened for lung cancer. Looking back, she displayed the classic signs: wheezing, bronchial issues, a swollen neck, not to mention the intense pain she suffered for years.

Early screening and detection may have given us more time, as well as mitigated the pain and suffering that undermined her quality of life. My mom had a medical home, the same one for more than two decades, without a single lung cancer screening, although looking back, she presented with common symptoms, and checked the box for at least one risk factor. 

Racial disparities alone provide an impetus for medical providers to screen for cancer. According to the American Cancer Society (ACS), Black people carry a disproportionately higher cancer burden. The 2025 ACS report, Cancer Statistics for African American and Black People, underscored inequalities in care and outcomes persist for many types of cancers — and these deficits keep death rates high for Black people and survival rates low.

I recall accompanying Mom to numerous appointments. She consistently complained of hip, neck, and ear pain and pointed to swollen areas in her neck. Her wheezing was audible and witnessed by her provider. Because Mom was a never-smoker, she experienced what I call reverse stigma. It was assumed that a cancer screening, specifically a lung cancer screening, was unnecessary. Mom never missed a doctor visit, blood draw, or metabolic screening. Her wheezing and bronchial issues were summed up as late-stage asthma.

Desperate for answers, we switched her care to a provider that bills itself as a geriatric care specialist. This transition netted zero benefits. My mother didn’t lack access to care; what she lacked was access to quality, competent care. This negligence is what set the wheels in motion for the ultimate blindside. Quality care would have meant receiving cancer screenings years prior. As her advocates, it never occurred to us to make that suggestion because lung cancer wasn’t a part of our family history. We noticed that Mom sometimes suffered from respiratory issues, and noticed that she would continue to wheeze after breathing treatments, but never deduced that it could be symptomatic of lung cancer. Clearly, neither did her doctors.

If it weren’t for her fall and subsequent trip to the ER, we may have never known why she had been in so much pain for so many years. And hearing the oncologist say the T12 vertebra fracture may have been the cause of the fall because of the toll the cancer had taken on her bones unnerved me. The cancer originated in her lungs, spread to her lower back and hip, and eventually to her brain. She had cancer for years, and it wasn’t diagnosed until she was 84.

Mom suffered from stage four, non-small cell metastatic lung cancer. She passed 90 days from the day she was diagnosed. A single mother, she raised three children and provided for us while working in occupations that posed environmental hazards. 

Heart sick

By the time this article is published, it will be 90 days since my mother left this earth. Heartbroken, and filled with utter grief and loss, I also find myself mad as hell. I don’t have a litigious bent, so I’ve chosen to channel this anger into advocacy and awareness so that perhaps this piece can spare another family the sheer devastation and loss that my family is experiencing. 

In full transparency, I borrowed the title of this article from a scripture in the Bible, Proverbs 13:12, “Hope deferred makes the heart sick.” My [hope] now is that awareness and information can save a life, or at the very least give a family member more time with a beloved.

Here are a few tips from the American Cancer Society that I hope are helpful.

Get your loved one screened for cancer

If the primary care provider (PCP) never screened for cancer, it’s crucial to schedule an appointment to discuss personalized guidelines, lifestyle — including work history – and family history. 

What to do right now:

  • Book a full checkup: Schedule a comprehensive visit with the PCP, emphasizing your desire to discuss cancer screening and prevention.
  • Share your history: Be prepared to discuss your family health history. And include other details such as whether your loved one was exposed to environmental hazards.
  • Ask about specific tests: Inquire about recommended screenings, such as mammograms (breast), colonoscopies/stool tests (colon), Pap/HPV tests (cervical), PSA (prostate), or low-dose CT (lung).
  • Understand and question guidelines: Ask your doctor about guidelines from organizations like the American Cancer Society (ACS) or the U.S. Preventive Services Task Force (USPSTF). However, don’t be duped by recommended guidelines that discourage cancer screenings. Consider the benefits of cancer screening based on your family’s situation, and if it is detected, explore the best possible options for your loved one.

If you don’t have a PCP, check these options:

  • Community Health Centers: Look for local community health centers or women’s clinics.
  • Hospitals: Many hospitals offer screening programs, sometimes for uninsured individuals.
  • The American Cancer Society: Contact their helpline at 800.227.2345 or online tools to find locations for breast, colorectal, prostate, cervical, and lung cancer screenings.

Why this is important:

  • Early detection saves lives: Catching cancer early significantly improves treatment success and recovery chances. 
  • PCPs play a key role: PCPs should integrate cancer-related checkups into regular exams, as some cancers don’t show symptoms until later stages.