In Vietnamese community, treating taboos on cancer

Posted on August 11, 2012

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Health experts seek to counter cultural prohibitions against speaking about the disease and to combat beliefs that patients did something to deserve it.

At the Vietnamese American Cancer Foundation in Fountain Valley, program manager Carolynn A. Nguyen, left, with Bich Van Nguyen, right, and Phuoung Ngo, says some members of the Vietnamese community have a fatalistic view of cancer. (Francine Orr, Los Angeles Times / July 16, 2012)

When Bich Van Nguyen learned she had lymph node cancer last year, powerful waves of shame and despair overcame her. She avoided her doctor for three months. She contemplated suicide.

Vietnamese cultural convictions intensified her dark feelings of responsibility. “I didn’t realize how bad my karma was,” said Nguyen, 46, who emigrated from Vietnam in 1990. “I just wanted to walk alone.”

Her knowledge of cancer was limited to an ingrained belief: She must have done something terrible in a past life to deserve this punishment. Such cause-and-effect thinking runs so strong in many Asian cultures, experts say, that some people fear that talking about cancer could bring on the disease.

“Cancer is a very taxing disease,” said Anne Coscarelli, a psychologist who directs the Simms/Mann-UCLA Center for Integrative Oncology. “If you feel personally responsible for it, then the amount of suffering is magnified.”

The clash of cultural mores and modern cancer medicine is especially problematic among the large Vietnamese populations of Orange County, the Bay Area’s Santa Clara County and Los Angeles County. Cervical and liver cancer rates are disproportionately high, with Vietnamese women five times more likely to develop cervical cancer than non-Hispanic white women.

Rates of Pap smear tests and colonoscopies lag behind those of other ethnic groups and below federal screening targets.

Vietnamese women also face taboos against discussing breasts or cancer linked to sexually transmitted diseases, which can exacerbate the challenges of diagnosing and treating malignancies early, health experts say.

Over the last decade, health professionals have made inroads and increased cancer awareness and acceptance in the Vietnamese community. But cultural obstacles, lack of insurance, language barriers and poor access to health services still contribute to scores of avoidable or premature cancer deaths among Vietnamese Americans, officials say.

Though many cancers are now survivable, a Vietnamese saying persists: “Cancer will lead you to death,” bolstering the notion that a person with the disease did something to deserve it, health advocates say.

“It causes people to hold people back from asking questions and seeking information,” said Jacqueline Tran, a health director at the Orange County Asian and Pacific Islander Community Alliance.

Carolynn Nguyen, a program manager at the Vietnamese American Cancer Foundation in Fountain Valley, has seen the fatalistic attitude among Vietnamese clients diagnosed with breast cancer. “They’re ready to die,” she said. “Some of them don’t bother to get treatment; they just give up and shut down.”

Sexual taboos associated with female cancers also make it difficult to address the topics directly, particularly among older and more traditional women. Discussing breasts — which are sometimes called “flower buds” — is considered immodest. Breast cancer is often vaguely referred to as chest cancer, said Ching Wong, executive director of the Vietnamese Community Health Promotion Project based at UC San Francisco.

“We have to not stigmatize it and bring it up front and say, ‘Breast cancer is breast cancer,’ ” he said. ” ‘Chest’ is a totally different thing.”

Cervical cancer carries a particularly strong stigma because it can be sexually transmitted through the human papilloma virus. Some Vietnamese women worry that getting a test would label them as promiscuous. Or they mistakenly believe they cannot contract the cancer if they are monogamous, said Ngoc Bui-Tong, chair of the Vietnamese Reach for Health Coalition in Fremont in the Bay Area.

Likewise, older Vietnamese women can be reluctant to ask a male doctor for a Pap test or mammogram. Outreach efforts stressing that cervical and breast cancer are preventable help encourage women to seek annual tests, Wong said.

Training community members as lay health workers can also reinforce the message. In San Jose, the Vietnamese Community Health Promotion Project coached Vietnamese women in cervical cancer education, which they then shared through social networks. The result: Nearly half of their untested family and friends scheduled Pap tests for the first time.

Asian women also feel cultural pressure to put their family’s needs before their own, health experts say. Some Vietnamese mothers juggle taking care of children, husbands, parents and in-laws at the expense of their health, said Bichlien Nguyen, a breast oncologist in Fountain Valley who helped found the Vietnamese American Cancer Foundation. “I have young women who have very bad cancer, and they have refused treatment sometimes because it takes too much of their time.”

Health workers are trying to tap that family dedication to alter behavior. “If you take care of your health, then you will be here to care for your family,” Tran said.

That’s also the message promoted in a weekly show on Santa Ana-based Little Saigon Radio. Started by Bichlien Nguyen, the show encourages screening and seeks to dispel misconceptions about cancer. “Cancer doesn’t have to be a death sentence at all,” the oncologist said.

Nguyet Anh Nguyen, 56, of Fremont was open about her breast cancer diagnosis, which became obvious when she lost her hair during radiation treatment. But a friend with breast cancer donned a wig to hide her own diagnosis from her in-laws. Her friend feared she would be blamed for bringing bad genes or bad karma into the family, Nguyen said.

But talking candidly about cancer ultimately helped her own family, said Nguyen, whose cancer is now in remission.

“They think cancer is something scary; it just holds them back,” she said. “They just ignore it.… I keep telling them, ‘If you find it early, you can treat it. It’s treatable.’ ”

This past year, all nine of Nguyen’s brothers, some as old as 65, requested a colonoscopy for the first time.

For Bich Van Nguyen, the Garden Grove woman with lymph node cancer, the disease has taken a physical and emotional toll.

Divorced, unemployed and unable to afford a place of her own, Nguyen and her two children rented a room in a Vietnamese family’s home in Garden Grove. When the owners heard about Nguyen’s cancer, they wanted her out, she said. They feared she might die in their home or spread her cancer to them.

She recently moved, but said her new landlord also started complaining when he found out about her cancer.

Lacking transportation, she walks to all of her doctor visits. At times, the grueling chemotherapy made her wonder if dying would be easier.

Nguyen’s lifeline has been a monthly cancer support group. “It lifts me up emotionally,” she said.

A few weeks ago, her doctor offered her a fresh reason for hope. After eight exhausting months of treatment, her cancer is in remission.

Erin Loury

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