My husband and I were doing what married couples do in bed after a romantic anniversary dinner. An odd look suddenly crossed his face.
“What’s wrong?” I asked.
“I just felt a small lump on your breast.” We carried on and fell asleep.
The next day, my husband said, “Call your doctor. Get that lump checked out.”
I called my doctor. It turned out to be cancer. I am alive 32 years later only because of sheer luck. Only by chance, I didn’t become a statistic.
The Center for Disease Control and Prevention reported in 2017 that cancer is the leading cause of death among Asian or Pacific Islander Americans. Asian Americans have the lowest rate of cancer screening among all ethnic/racial groups in the country. It’s a complicated problem, with complicated cultural roots, like the shame and fear that stems from thousand-year-old East Asian traditional beliefs. Some believe that illness results from karma or bad choices. And Chinese Americans may be especially vulnerable to cancer self-stigma, according to research published through the University of Texas MD Anderson Cancer and the Chinese University of Hong Kong in 2019.
I certainly felt that pressure. For 28 years, I kept my breast cancer a secret. I lived in fear that my Chinese-American friends would shun me if I told them what I had endured.
Worse are the stories of people who have told me this fear stopped them from potentially life-saving preventative care. Four years ago, a Chinese-American friend told me she has never gotten a mammogram. Another declared she would rather die than get one. These anecdotes convinced me I had to speak up. Gripping the podium in my sweat-stained blue dress, I looked out at the 300 congregants in my Chinese-American church. I took in the encouraging smiles on the faces of close friends. I had delivered announcements before, but this time was different.
Minutes before I spoke, I begged myself not to cry. I did anyway. Twenty-eight years of secret-keeping just spilled out. I saw tears on the cheeks of my teenage children.
Stigma about cancer led me to keep my illness hidden. I was ashamed to be sick. My shame stemmed from East Asian beliefs that I or my ancestors did something to bring about this misfortune. I thought Asian Americans would ghost me if they believed bad luck would befall them if they associated with me. Some might even believe cancer was contagious.
You might think this kind of stigma is exaggerated. What kind of rational person believes such nonsense? A friend’s Chinese-American neighbor treated her like a pariah after she got breast cancer, refusing to speak to her for years.
When my husband urged me to get the lump in my breast examined, I didn’t think much of it. A doctor used a needle to extract fluid from the bead in my breast. Still, I wasn’t particularly worried. After all, I was only 29.
Two days later, after my diagnosis, sobs racked my body. I didn’t think young women, much less young Asian women, got breast cancer. I was shell-shocked.
Doctors were able to save my breast, but the chemo cocktail regimen was grueling. Six weeks of radiation and then months of chemo. With new drugs, patients experience less nausea and other side effects after a round of chemo. But back then, I stayed in bed for hours after having the toxic chemicals dripped into me.
Yet, instead of seeking the support of friends and fellow churchgoers, I suffered in silence. I was determined to appear strong, perfect. And this behavior wasn’t just emotionally taxing — it could have been taking a physical toll as well.
A 2017 study in Germany showed that cancer-self shame is associated with a poorer quality of life among cancer patients. A 2019 study by eight researchers at six universities predicted that stigmatization and self-shame can lead to a lower quality of life among Chinese American breast cancer survivors.
When I finished my last chemotherapy, I shouted, “I’m done! I’m done!” I hoped to never visit an infusion center again. My husband and I waited for two years, until it was safe. And then, at age 32, I had a healthy baby girl. Another girl and a boy soon followed. Busy with work, kids, community and church activities, I never talked about my secret. I didn’t see any reason to.
And then I was having lunch with an Asian American friend and mentioned I was going to get my annual mammogram.
“I never get one. I’m afraid to find out,” she said.
I paused, took a breath, and shared about my illness.
But what about other Asian American women who might be too afraid to schedule a mammogram? I already knew my mother-in-law was one of them. I pleaded with her until she finally got her first one, at age 60. The doctors found a malignancy, but it was caught early. Surrounded by her children and grandchildren, she celebrated her 91st birthday last month.
I revealed my illness in church that day to encourage other women to take charge of their health and helped to organize a breast cancer talk for the Asian community. During the event, one after another, women raised their hands, starting their questions with words like, “My friend has breast cancer,” or, “I know someone with the disease.” Later, some people approached me and whispered their own cancer secrets.
Treating disease like it’s a curse has to stop.
My two 20-something daughters know they are at a higher risk of breast cancer because of their genetic history. Every year, I get a mammogram — and they celebrate and worry with me.
The American Cancer Association reports that 1 in 8 American women will develop breast cancer. The organization estimates that around 43,600 American women will die in 2021 of the disease. Let’s do what we can for our own health. We’ll be glad we did.