"The scariest part of my cancer journey was not losing my hair or my breast. It was losing my mind.”
That’s how Chien-Chi Huang recalls the year she was treated for triple-negative breast cancer.
While contending with side effects, Chien-Chi felt isolated and longed to speak in her native Mandarin Chinese with other women affected by breast cancer. The Somerville, Mass., woman didn’t have that cultural support then but would later take action to help other Asian-American women connect with each other.
Chien-Chi’s breast cancer diagnosis came just three months after her first mammogram, at age 40, which had shown no problems. First, she felt burning on her cheek while watching her 5-year-old son play soccer. Later, her cuticles became sore. She felt tired, as if she had the flu.
One day, while lying in bed, she felt a lump under her arm. After her diagnosis, she received treatment with pre-operative chemotherapy, surgery and radiation.
Side Effects on Mental Health
Chien-Chi’s oncologist prescribed prednisone to treat her skin ailments. It produced difficult mood changes. Chemotherapy seemed to compound them.
“My mind was so clear. I was on all the time,” she says. “At the same time, my body couldn’t catch up with my mind. Even the most simple things overwhelmed me.”
Chien-Chi had little support. Her family had just moved back to the Boston area, and her relatives lived in Taiwan and elsewhere. “I felt very alone,” she says.
Her in-laws, who are non-Asian, moved in temporarily to help with her two young children. In the small home, there were strains and adjustments between differing cultures. Chien-Chi craved homemade comfort food, such as Taiwanese rice noodles and ginger sesame chicken, but no one could provide it. It was also hard for her to be the care-receiver instead of the caregiver.
After treatment ended, Chien-Chi became depressed. Her oncologist suggested she see a therapist. She did but was afraid to take more medicine.
Chien-Chi had never experienced such mood conditions before. “I don’t think anyone prepared me or my family for this,” she says.
Finding Her Way
While still in treatment, Chien-Chi began attending a support group and writing workshop. It helped to hear others talk about their situations. She began sharing her stories.
Within several months, Chien-Chi began to feel better. She got a job outside the house. Yet she still longed to connect with other Asian women who had been diagnosed with breast cancer. No local organization could help.
Seven years passed. Then Chien-Chi went to the Massachusetts Affiliate of Susan G. Komen for the Cure to see if they trained bilingual women to be community breast cancer educators. They didn’t but suggested she develop a program and apply for one of their grants.
From Chien-Chi’s tough personal experience, the Asian Breast Cancer (ABC) Project was launched. The program trains Asian-American women to provide education on breast health and breast cancer in Mandarin Chinese, Cantonese Chinese, Vietnamese and English to underserved women in the Boston area. In two years, ABC has trained about 30 women, including four women affected by breast cancer.
“It’s not unique for survivors to turn their frustration into something that’s positive,” says Chien-Chi, now 48. “What’s different for me is that there aren’t that many Asians willing to step forward and talk about it.”
The project educates hard-to-reach Asian-American women in their homes and works with community organizations to conduct public educational workshops. ABC-trained lay health educators provide information and referrals to breast health services and screenings. The group also gives cultural awareness training to healthcare providers, to improve communications with Asian-American women on breast health issues.
Now Chien-Chi’s work may help others avoid the isolation and mental health difficulties she had during and after breast cancer treatment. Soon, ABC will be part of an organization Chien-Chi is forming to advance Asian women’s physical, emotional and spiritual well-being through education and support.
“I am a true believer that culturally and linguistically relevant prevention education and post-treatment support can save lives and families,” she says.
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This article was supported by Cooperative Agreement Number DP11-1111 from The Centers for Disease Control and Prevention. Its contents are solely the responsibility of the authors and do not necessarily represent the official views of the Centers for Disease Control and Prevention.