Photo by Richard Cavosora, courtesy of Asian & Pacific Islander American Health Forum’s “A Book of Hope: Stories of Healing to Honor Asian American & Pacific Islander Cancer Survivors.”
We may be nearing the end of October, but that doesn’t mean breast cancer awareness stops here. The most commonly diagnosed cancer among Asian American women is something we have to be vigilant about year-round. Here, a personal story about one woman fighting for awareness in the Asian American community.
“Asian women don’t get breast cancer.”
What if you heard these words from a medical professional? Susan Shinagawa did in 1991 after finding a lump in her breast during her monthly self-exam. Today, it’s those words that drive the work she now does. Shinagawa wants to make sure that no other woman of Asian descent will hear these words and that all women regularly get screened for breast cancer.
A decade ago, Shinagawa was working as a program administrator at an academic cancer center in San Diego, Calif. She says that, at the time, she knew very little about cancer even though she worked at the center. A friend of hers was giving breast self-examination (BSE) workshops and asked Shinagawa to attend. So she went to support her friend.
At the workshop, Shinagawa’s friend mentioned several risk factors for breast cancer that caught her attention. She had a couple of those risk factors and decided that she should start doing BSE. She began doing monthly BSE and recorded what she felt each month on a breast map.
“After several months of doing monthly self-exams, I felt something completely different in May 1991 than I’d ever felt,” Shinagawa says during our phone interview. “It was really obvious and just underneath my skin. I could even look straight down and see this lump sticking out.”
Shinagawa was preparing to take a leave of absence from work to join her naval pilot husband in Florida for a year. Before she left, she decided to get the lump checked out.
Her mammogram came out negative. However, says Shinagawa, at that time, 40 percent of all pre-menopausal women had false negative mammograms. The diagnostic radiologist decided to do a sonogram, which showed Shinagawa’s lump to be a solid mass, and not cystic. So Shinagawa went to see a surgical oncologist, who told her that she had fibrocystic breast disease, a.k.a. lumpy breasts. He told her that she had nothing to worry about, that she was too young to have breast cancer, she had no family history of it and besides, “Asian women don’t get breast cancer.”
“At that time, I really didn’t know anything about breast cancer or cancer statistics. So his comments really didn’t hit me,” says Shinagawa. “All I was thinking was, ‘I’m young and this is what I want to hear.’” But a little voice inside Shinagawa’s head kept telling her that something was going on.
The following day, Shinagawa asked the surgical oncologist to do a biopsy anyway for her “own peace of mind.” He replied, “I see thousands of young women like you every year and I can tell you for certain that you do not have breast cancer. I won’t even consider doing a biopsy.”
Once Shinagawa got to Florida, she started looking for a part-time job. But she couldn’t forget the lump in her breast, especially because it was painful. “The fact that my lump hurt was a very good thing for me,” she says. “Every time I put on a shirt or my husband hugged me, it really hurt. So I finally decided to get a second opinion.”
The second doctor Shinagawa went to told her, “I can tell you with 99.9 percent certainty that you do not have breast cancer.” By this time, Shinagawa was not taking “no” for an answer so she demanded a biopsy.
The day after the biopsy, Shinagawa came home from a day of job-hunting to a message from the doctor on her answering machine. “He left me four numbers [to reach him] … and it was a Friday night. I thought, ‘This is not good,’” Shinagawa recalls with a laugh. “I pretty much knew before I called him what he was going to tell me. But actually hearing him say the words, ‘Susan, I’m very sorry, but you have breast cancer’ was like driving 60 miles per hour into a brick wall.”
Shinagawa’s mind was racing. “Oh no, I have breast cancer. I’m going to die.” “Oh no, I’ve got breast cancer. I’m going to die a horrible death.” “Oh, no, I have breast cancer. I’m going to commit suicide.” Then finally, “I’ve got breast cancer. I’d better do something about it.”
After much consultation and research, Shinagawa decided to have a modified radical mastectomy. “I didn’t want it, I didn’t need it,” she says of her cancerous breast. “I never defined myself by my breasts so they weren’t important to me. It’s a difficult decision for a lot of women, but for me it didn’t matter.”
Shinagawa found support in Dani, a patient ombudsman for the cancer center. Dani had been diagnosed with breast cancer when she was 29. “When I was done talking with her, I went from being scared to thinking to myself, ‘I can get through this,’” says Shinagawa. “One of the first things I tell people when they get diagnosed is that they must talk to somebody else who’s been there and done that. It is the best thing you can do for yourself.”
After Shinagawa got her right breast and lymph nodes removed, she opted for six months of chemotherapy, even though that was not standard procedure at that time. Shinagawa did her own research and found a clinical study comparing young breast cancer patients receiving just surgery with those receiving surgery and chemotherapy treatment. Her doctors called her hysterical and tried to talk her out of it, but she insisted. She had previously been talked out of having a biopsy and would not allow it to happen again. Halfway through Shinagawa’s chemotherapy treatment, the results of the clinical study were released, showing a “significant survival advantage” for the surgery plus chemotherapy category over surgery alone.
By the time Shinagawa completed chemotherapy, she began teaching BSE classes with Dani. Over the next four years, Shinagawa was appointed to various cancer advisory councils at state and national levels, and her advocacy work increased.
But it wasn’t happily ever after. In 1996, Shinagawa was diagnosed with carcinomatous meningitis (CM), a then-rare type of cancer recurrence in the cerebrospinal fluid. After years of painful treatment, she recovered, but then in early 2001, the cancer returned in her right breast. Shinagawa chose to have a second modified radical mastectomy.
Shinagawa is still in active treatment and she has her good days and bad days. But despite the setbacks, she continued her advocacy efforts as a volunteer.
In fact, shortly after her first breast cancer diagnosis, she began studying the statistics for breast cancer and women of Asian descent, and they didn’t make sense to her. The National Cancer Institute was reporting that Asian/Pacific Islanders (APIs) had among the lowest breast cancer rates of all U.S. women. She realized that this aggregate category may be resulting is misleading cancer data. So she began to educate communities, legislators and researchers on the need to not only distinguish Asian American, Native Hawaiian and Pacific Islander populations, but also sub-populations within each category.
She also encourages the API community to share their stories of cancer, and co-founded the Asian & Pacific Islander National Cancer Survivors Network (APINCSN) with the late Reverend Frank Chong, who was a boardmember of the Asian & Pacific Islander American Health Forum (APIAHF).
Dr. Giang Nguyen, assistant professor of family medicine and community health at the University of Pennsylvania School of Medicine, agrees. “We need more Asian American, Native Hawaiian and Pacific Islander men and women to become vocal about their cancer stories and their survivorship experiences,” he says. “This will help to dispel myths about cancer being an automatic death sentence and will help to give faces to the disease.”
These days, Shinagawa calls herself a “professional volunteer.” She has become one of the nation’s leading cancer advocates for the medically underserved, particularly those in Asian American, Native Hawaiian and Pacific Islander communities. She is proud of the progress that has been made in terms of the number of Asian American, Native Hawaiian, and Pacific Islander cancer survivors and family members who are sharing their cancer experiences, as well as the number of population-specific cancer support groups that have popped up those communities.
Still, she acknowledges that more needs to be done. Until doctors stop telling their patients that “Asian women don’t get breast cancer,” until the disparity between who lives and who dies from cancer is eliminated, and until the nation achieves health equality among all its populations, there is a whole lot more work left to do.
Shinagawa urges all women, regardless of age, ethnicity, birthplace, level of income or resources: Be examined by a healthcare professional and go for regularly scheduled mammograms. “Breast cancer does not discriminate,” she says, “and for that reason it is so important that we take our personal health seriously and literally take our lives into our own hands.”