It was fall 2021 and Aurora Lucas had a persistent cough and chest pain. However, her doctors dismissed the symptoms and told her to drink hot water and honey.
After three months of hospital visits, Lucas was diagnosed with stage 3 lung cancer at the age of 28, despite never having smoked. Lucas, a Filipino American, represents a worrying trend for researchers.
According to a study from California, lung cancer rates are declining for every group except non-smoking Asian American women - whose rate is actually increasing by 2% per year.
Although lung cancer has traditionally been linked to cigarettes, as many as 20% of cases in the US each year occur in non-smokers. Among Asian American women with lung cancer, more than 50% have never smoked. And for Chinese and Indian-American women with lung cancer, the non-smoking rate rises to 80% to 90%.
Scientists are baffled by this pattern and it has led to a recent wave of research. In two ongoing blockbuster studies at the University of California, San Francisco and New York University, they looked for reasons why Asian American women are at particularly high risk and for ways to catch their tumors earlier.
"It's such a high rate; over there has to be an explanation for that," Lucas said.
In May, the NYU researchers shared preliminary data at the American Society of Clinical Oncology conference showing that lung cancer screening in non-smoking Asian American women works as well, if not better, than screening older, mostly white smokers.
Now, doctors are sounding the alarm about the rising rates of lung cancer in this community and are working to reform screening guidelines to better include Asian American women.
"As an Asian woman, I have learned to be quiet," Lucas said. "I had a lot of respect for doctors and medical staff, so I would never really doubt what they told me," even if they didn't understand what was going on.
Insight into the risk factors
UCSF epidemiologist Scarlett Gomez was born in Taiwan before immigrating to the U.S. at the age of seven. Her parents worked in Chinese restaurants in Washington state. But that also meant that they were constantly, unknowingly, exposed to toxic cooking oil fumes.
"Like many immigrant families, my parents worked in industries that were not well trained enough," Gomez said. "That was the job they had to do to get here."
To date, studies of female non-smokers in Asia have identified risk factors such as cooking oil fumes, passive smoking, air pollution and heating buildings with coal, but no studies have focused on Asian issues. American women, Gomez said.
Still, there is probably some overlap. For example, a 2019 study found that Asian Americans inhale 73% more small pollution particles than white Americans, most likely due to greater exposure to construction, industrial and vehicle emissions where they live.
Air pollution can also lead to genetic changes, so Asian patients have one of the highest rates of the cancer-causing epidermal growth factor receptor mutation, which causes healthy cells to divide uncontrollably and grow into tumors.
"I hope we'll see more research to address these unusual, emerging disparities among Asian Americans that we haven't paid attention to before," Gomez said.
Given the lack of clarity, Gomez and Iona Cheng, a fellow epidemiologist at UCSF, launched the Female Asian Never Smokers (FANS) study in 2021. It is a case-control study, in which the team studies non-smoking Asian American women who have either recently been diagnosed with lung cancer (the cases) or who have never had lung cancer (the controls).
Although the two groups are matched in ethnicity and age, the researchers hope to find some differences in genetics, as assessed through saliva samples, and environmental exposure, determined through studies of people's pasts. "The whole purpose of this study is to identify risk factors," Gomez said.
However, FANS cannot prove cause-and-effect relationships, says Dr. Latha Palaniappan, a physician at Stanford University who was not involved in the study.
First, women with lung cancer are more likely to remember their exposure to chemicals and toxins than women without lung cancer because they have thought more about their risk factors - something known as recall bias.
Still, Palaniappan emphasized the groundbreaking nature of FANS, because "we can certainly understand associations, and the study can give us an idea for more rigorous analyzes in the future."
Making lung cancer screening fairer
At NYU, Dr. Elaine Shum, an oncologist, has seen dozens of non-smoking Asian American women with lung cancer, many with stage 4 of the disease. And it's always frustrating: Screening for lung cancer, via the low-dose CT scan, could have helped these women find their tumors earlier, in more treatable stages.
But insurance plans typically only cover screening for people ages 50 to 80 with a heavy smoking history - almost excluding Asian American women. And the recommendations were based on the National Lung Screening Trial, a clinical study of 53,000 older smokers, more than 90% of whom were white.
So in 2021, Shum launched her own clinical trial, screening 1,000 never-smoking Asian American women for lung cancer. Her initial results, which she presented at a major cancer conference, showed that Asian women had a higher detection rate for lung cancer than in the original national trial: 1.5% versus 1%. "Based on these preliminary data and other ongoing efforts, Asian women represent another at-risk population that warrants screening," Shum said.
Palaniappan, who is also not involved in Shum's study, tends to agree: "It is extraordinary that screening in this population yielded a similar incidence of lung cancer" as the original study. But Palaniappan also cautioned that better inclusion of Asian American women in screening guidelines is still a long way off, and that many more studies are needed to confirm and build on Shum's findings. "We're just getting started," she said.
"There is hope; there is a lot of progress in the lung cancer world," says Lucas. "I can't change the system because it is broken, but I can help people stand up for themselves and learn."
Why Asian American Women Are Left Behind
When Lucas was diagnosed with lung cancer, she was in the second year of her Ph.D. program, while simultaneously working as a special education teacher in Chicago. She had always considered herself healthy, so she initially attributed the chest pain and coughing to stress. Now she knows that Asian American women are at high risk for lung cancer, but she still doesn't understand why her doctors didn't.
While the research at UCSF and NYU is promising, it is unclear why these are among the first and only studies in 2024 to focus on Asian American women with lung cancer.
On one level it is a problem of consciousness.
"Many Asian patients are very private and don't want others to know about their diagnosis," Shum said - often because they don't want to burden their friends and family or because they worry about the stigma of lung cancer. . Perhaps as a result, the most common response from Asian American women when they hear about Shum's work in lung cancer is: "I didn't even know this was a problem," she said.
And that lack of awareness is exacerbated by poor-quality data, according to Stella Yi, who co-leads the Innovations in Data Equity for All Laboratory at NYU. In fact, Asian Americans are often lumped into the "Other" category in surveys or into other overly broad groups like Asian Americans, Native Hawaiians and Pacific Islanders, or AANHPI, which obscure their data.
Most national databases also collect information in English and sometimes Spanish, meaning many people never get the chance to be included. "So when you look at data reports where Asian Americans look healthier than everyone else, it's because you're only reaching the highest incomes and the most educated," Yi said.
As a result, lung cancer cases among Asian American women are likely underreported, and the data reinforces racial stereotypes. "Asian Americans are thought to be healthy; they are the model minority," Yi continued, referring to the myth that all Asians have high academic and economic achievements. 'They do tai chi in the park, so why would they get lung cancer? Why would they have health disparities?"
For scientists looking to disrupt that narrative, it could be incredibly difficult, because only 0.17% of the National Institutes of Health's budget over 26 years was spent on AANHPI research. "We hear many stories from patients with lung cancer whose GP said: 'You don't need this; you're not at much risk," Shum said. With poor data and a lack of research among Asian American women, "lung cancer is being pushed aside."
That's why Lucas believes it took her three months for a doctor to take her symptoms seriously and make a diagnosis. "My doctors denied the possibility of cancer," she said, as the team fluttered from sore throat to tuberculosis to the idea that there was actually nothing wrong with her.
"I needed therapy, not one to tell me it's going to be okay," she continued. By the time they diagnosed her with cancer, she had three tumors in her lungs, the largest of which was the size of a lime.
Lucas didn't cry then. "Honestly, I felt relief because fighting insurance and trying to even get that diagnosis was the worst," she said.
In many ways, it's not surprising that Cheng, Gomez and Shum - three Asian American women - are leading the unique investigations, because who else would be motivated enough to jump through all the hoops and break through the skepticism?
"It has been a very personal issue for us," Cheng said. "As Asian Americans ourselves, we see this in our community. It just adds another aspect to our commitment to drawing attention to this inequality."
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