This is part of an ongoing series of posts we plan to publish in order to help raise further awareness of lung cancer. We hope to highlight the work of the 20+ lung cancer patient advocacy organizations collaborating with us on our recently launched Lung Cancer Genetics Study.
It’s not as if lung cancer is an obscure disease, and yet facts about lung cancer are not well known.
23andMe wants to spotlight the disease while also highlighting our efforts with our Lung Cancer Genetics Study and the work of more than 20 organizations collaborating with us on this important new research, which aims to identify genetic risk factors that contribute to lung cancer. Ultimately the goal of the study is to improve prevention, detection and treatment for lung cancer.
- Read our previous post: A Legacy of Hope in the Fight Against Lung Cancer
Lung cancer is the leading cause of cancer death worldwide. In the US, it accounts for one in five cancer deaths and kills nearly as many people each year as colon, breast, and prostate cancer combined. These staggering statistics underscore the urgent need for greater awareness and more research.
Dispelling Common Myths About Lung Cancer
Our first post in this series looked at the origins of our Lung Cancer Genetics Study and how the collaboration started. This one focuses on myths and facts about lung cancer, and we are again leaning on the expertise of some of our collaborators. This time, we talked to leaders from the LUNGevity Foundation and Upstage Lung Cancer. They shared some common misconceptions about lung cancer and some facts they wished more people knew.
Myth: Only People Who Smoke Get Lung Cancer
No, it’s not just people with a history of tobacco exposure who get lung cancer.
Among lung cancer survivors and advocates, this pervasive myth about lung cancer being only a disease for people who have smoked is particularly vexing, and it’s not true.
Indeed, cigarette smoking is strongly linked to lung cancer, but as advocates like to say, “anyone with lungs can get lung cancer, but no one deserves it.”
Fact: Many Risk Factors Play a Role in Lung Cancer
“All the warnings about the dangers of tobacco exposure, which are totally legitimate, got people to make this very powerful association — tobacco exposure leads to cancer, but it’s not the only cause. Making this connection, we often ignore other causes,” said Upal Basu Roy, PhD, MPH, Executive Director of Research for the non-profit LUNGevity Foundation. “It’s hard to see beyond tobacco exposure.”
“Active tobacco exposure is indeed an important risk factor that’s been well-studied. However, other risk factors, such as radon exposure, passive (or secondhand) tobacco exposure, occupational exposures, air pollution, and genetics, all can play a role in lung cancer development. Often, it is a complex mix of many of those factors that contribute to why some people develop lung cancer”, said Upal.
In 2019, nearly 15% of lung cancers were not related to direct tobacco exposure. To put that into perspective, lung cancer in people who never smoked cigarettes, or LCINS, would be ranked in the top ten causes of cancer deaths if ranked separately from tobacco exposure–related lung cancer. LCINS is on the rise, and more research is needed to have an accurate estimate of the true numbers of LCINS today.
“80 to 90% of people with tobacco exposure never get lung cancer, while many people without tobacco exposure get the disease,” said Upal. “It’s incredibly complex. We haven’t unpacked how much a role all these contributing factors play, and that’s why this genetic study is so interesting. It offers a chance to learn more about the nature of the disease and how these factors might interact.”
Lung Cancer Screening and Early Detection
Myth: There’s No Way to Detect Lung Cancer Early
Current US screening recommendations include:
- Ages 50–80
- 20-pack-year cigarette smoking history
- Currently smoking or having quit within the last 15 years
Lung cancer screening exists — but not everyone at risk is eligible. There is a strong association between tobacco use and lung cancer, and current guidelines consider this history for screening eligibility. Current US guidelines recommend screening for people ages 50 to 80 who have a 20-pack-year cigarette smoking history and currently smoke tobacco or have quit within the last 15 years.
Unfortunately, the vast majority of people who are eligible for lung cancer screening don’t receive it. According to the American Lung Association, only 16% of eligible people were screened for lung cancer in 2024. Much work remains to ensure everyone eligible for screening knows about and has access to this life-saving healthcare measure. And additional progress is needed to expand lung cancer screening to include others at high risk, like those who have never smoked.
Fact: Not Everyone at Risk of Lung Cancer is Currently Eligible for Screening
While lung cancer in people with a smoking history is more common in men, two-thirds of people diagnosed with LCINS are women. Hildy Grossman, who describes herself as a clinical psychologist by day and a jazz singer by night, is one of those women diagnosed with lung cancer who’d smoked cigarettes as a teenager but quit at age twenty.
Hildy was diagnosed in December of 2006 by chance. She’d slipped on the threshold of a narrow stairway, resulting in pain in her wrist. After a series of missed diagnoses, Hildy eventually had an MRI to determine if a pinched nerve in her back was causing the pain. Instead, the MRI showed two spots on her lungs. A biopsy revealed it was lung cancer. Her doctor told her how lucky she’d been that they caught it early, saying, “Somebody up there likes you!” Since her tumor was diagnosed so early (stage 1A), her treatment only required surgery, which she had in January 2007.
“As I came to terms with (the diagnosis), I asked myself, ‘Why me?’ Not ‘why did I get lung cancer,’ but ‘why was I able to find it so early and survive,’” Hildy said. The question prompted her to start Upstage Lung Cancer, an organization using music and the performing arts to raise awareness and support lung cancer research. Hildy is both the founder and president of the board.
The Need for Expanded Screening Criteria
While current lung cancer screening guidelines have saved many lives by detecting cancer early, they also miss many others who may be at risk but who never smoked, or like Hildy, who quit cigarette smoking many years earlier. The problem is that there aren’t yet criteria outside of tobacco use for identifying those who are at the highest risk and could benefit most from screening. Without early detection, many lung cancers are not diagnosed before symptoms appear, such as a persistent cough or coughing up blood. And by the time symptoms occur, it’s likely the cancer has spread and will be harder to treat. In contrast, people diagnosed with cancer in its earlier stages tend to live longer or can even be cured. Lingering misconceptions about who is at risk leave many people vulnerable.
“That’s why early detection research (part of the Lung Cancer Genetics Study) is so important,” Hildy said.
Beyond One Disease
Myth: All Lung Cancer is the Same
There are two main types of lung cancer — non-small cell lung cancer and small cell lung cancer. Eighty to 85%of lung cancer cases are non-small cell, and 10 to 15% are small cell. Then, there are numerous subtypes within those types of lung cancer, said Upal.
“And the biology is different, which has implications for how the lung cancer is treated,” said Upal.
Fact: Biomarker Testing Can Identify Lung Cancer Subtypes and Guide Treatment
Some lung cancer subtypes are defined by specific changes in the cancer cells, known as oncogenic driver mutations. These mutations speed up cancer growth. Some of these subtypes can be identified through biomarker testing, which looks for genetic changes in specific genes like EGFR, ALK, RET, or HER2. Discovering whether a tumor has one of these mutations — a biomarker — can help doctors choose the best treatment options, including targeted therapies for specific mutations.
Biomarker tests for non-small cell lung cancer (NSCLC) | |||||
---|---|---|---|---|---|
ALK BRAF |
EGFR ERBB2 / HER2 |
KRAS MET |
NRG1* NTRK |
PD-L1 RET |
ROS1 |
*A targeted therapy for NRG1 mutations was also recently approved by the FDA.
However, only some people who might benefit from biomarker testing receive it. For example, one study examined rates of biomarker testing in more than 17,000 people who were diagnosed with advanced non-small cell lung cancer between 2015 and 2021. This study found that while testing rates increased over time, nearly one-third of people did not receive comprehensive biomarker testing by 2020. Barriers to biomarker testing are complex and include issues like cost, time, tumor sample quality, and lack of awareness of the value of testing. These challenges emphasize the importance of insurance coverage for biomarker testing and approved targeted therapies, increased education of healthcare providers, and self-advocacy by patients and caregivers.
Continuing the Conversation on Lung Cancer Awareness
Misconceptions like the ones addressed here represent just some of the many challenges faced by people diagnosed with lung cancer. As part of our lung cancer blog series, we will continue to amplify the voices of patient advocates and raise awareness of these and other little-known facts about the disease.
Visit our Lung Cancer Genetics Study page to learn more about the 23andMe study, our collaborators, and eligibility criteria.