My Breast Cancer Experience Was an Exception for Asian Americans

“You have breast cancer.”

Four little words that can shatter a lifetime’s worth of plans, hopes, and dreams. When I received the call, I was two weeks shy of starting my dream job, preparing for my son’s kindergarten graduation, and looking forward to warm summer weather.

Cancer was not part of the plan. 

In true big sister fashion, my sister insisted, “It should be me. Not my baby sister.” But I disagreed. It’s natural to ask, “Why me?” after a diagnosis, but my sister’s reaction offered the gift of a reframe, “Why not me?” 

After all, I was privileged in nearly every way that might impact cancer outcomes. Unlike far too many Asian American and Pacific Islanders (AAPI), other people of color, immigrants, and those with low incomes, I had the resources I needed to focus on my health. If there is such a thing as a perfect candidate for a cancer diagnosis destined for favorable outcomes, I fit the bill. From supportive employment and generous paid leave to robust health insurance and the ability to cover out-of-pocket costs, I had a safety net. Many Asian American women in my position do not have those same supports.

This isn’t a small group. Breast cancer rates among Asian American women under 50 have surged by 50 percent since 2012. It’s a shocking increase, and while the exact causes are still unknown, we do know that early detection and diagnosis can significantly improve survival rates. Yet AAPI women collectively have some of the lowest breast cancer screening rates of any demographic.

For a host of reasons, preventive and routine health care is not a cultural norm for many Asian cultures, a reality I know well. I was raised to believe that you only go to the doctor when you are sick – very, very sick (think: broken bones or uncontrollable bleeding). My parents had far too much on their plates than to seek health care before any of us were even sick. 

Maybe younger women are starting to move away from this. But breast cancer rates have increased for Asian American women under the age of 50 across all stages of the cancer, which would seem to point to more than just early detection. 

In addition to cultural norms like this, health insurance coverage, a regular provider, and positive previous experiences with their health care are all factors for whether or not Asian American women seek preventive care. Language inaccessibility also compromises health care access for women in our communities. I do not take for granted that I am able to schedule appointments and explain the nuances of my symptoms and pain in my first language. If I don’t understand something — a medical term, the potential risks with a treatment, or what my outcomes might be — I feel comfortable enough to ask and keep drilling down until I fully understand. When I was set up with a radiation oncologist that I did not feel fully comfortable moving forward with, I was able to advocate for a change. Never once have I worried that my concerns and answers to my questions were lost in translation.

These barriers to health care access for Asian American women are compounded by factors further outside of our control. Dense breast tissue — which is a risk factor for breast cancer and can make finding breast cancer more difficult — is prevalent among Asian women. I was diagnosed with dense breasts in my early 20s during routine doctor visits. “Like finding a golf ball in a snowstorm,” my radiologist once told me. Armed with that knowledge, I was able to push for the additional screenings that led to my diagnosis.

How many Asian American women with the same condition do not have the benefit of an early breast cancer diagnosis and treatment because of barriers to their health care? 

So why aren’t researchers able to pinpoint the reasons behind the startling increases in breast cancer diagnoses among women in our communities? Starting with disaggregating research data by gender, ethnicity, and language will give us a fuller picture of the causes behind the increase. Research that funnels all Asian women into a single monolithic category is not just a statistical oversight, it’s a disservice to our communities. Asian Americans include more than 50 ethnic groups that speak over 100 languages, and our communities deserve research that reflects the breadth of our diversity and experiences and captures the unique factors affecting each community.

With more granular data, we’d be better positioned to answer key questions: How do we best reach AAPI communities? What information and resources will best support us? Breaking down the data would allow us to identify and address disparities specific to each group, bringing us closer to tailored solutions.

It has been more than two years since my own diagnosis and more than a year since I was deemed cancer free. But I can’t help thinking about the other Asian American women who might face cancer without the resources and support I had. They deserve access to health care, research, and resources that meet their needs and address the unique challenges they face. We owe it to our communities to close these gaps and ensure that no woman is left in the shadows of our health care system.

Article images courtesy of Virginia Yuna Lucy.