An Unusual Cancer Burden: APAs battle both disease and taboos
September 19, 2008
When it comes to cancer, APAs are not the model minority.
Lack of awareness surrounded by taboo and a tendency by health professionals to treat APAs as a homogenous group make the battle over the disease especially challenging. With all cancers considered, APAs may have lower rates of cancer compared to other groups. But what makes the burden of the disease unique is that APAs are the only group with death rates from cancer exceeding that of heart disease.
“I think there’s so much that other people take for granted in terms of the health plight of Asian Americans,” said Moon Chen, principle investigator of the Asian American Network for Cancer Awareness Research and Training (AANCART).
Chen pointed out that cancer is the leading cause of death for Americans 45 and older but for APAs, it is 25 and older.
“It’s one of those things that the American public and American scientific community neglects,” he said. “How are we the model minority?”
When Susan Shinagawa, 51, found a lump in her breast in 1991, the fact that she was an APA was one of the reasons why her doctor wouldn’t give her a biopsy.
“My surgeon said Asian women don’t get breast cancer,” Shinagawa recalled.
Shinagawa, a third-generation Japanese American who was 34 at the time, was told cancer couldn’t explain the lump because she didn’t have a family history of cancer, and she was simply too young.
That would have settled it if it wasn’t for the fact that the lump was so painful for Shinagawa. She felt it when she turned in bed. She felt it when she embraced her husband.
Shinagawa met reluctance again when she sought second opinion. Eventually she was diagnosed and treated for breast cancer. But five years later, recurrence of her cancer appeared in her spinal fluid. And a decade after her initial diagnosis, a new cancer was found in her other breast.
Shinagawa now shares her story as a survivor’s advocate. She co-founded the Asian Pacific Islander Cancer Survivors Network, which marked its 10th anniversary with a survivorship conference on July 22-24 in Burlingame. The conference was a networking and educational opportunity for 200 APA survivors and health professionals.
Shinagawa had difficulty finding APA survivors to share their stories when she was first diagnosed, so a three-day conference now shows how far the community has come about speaking out.
“I would find people who would say, ‘Oh, my aunt had cancer,’ but nobody would come up and say, ‘I’ve had cancer,’” Shinagawa said. “I realized what we really needed was something like [American Cancer Society] for the API population.”
In addition to Shinagawa’s survivors network, a long list of nonprofits, public health organizations and even church groups are now working to educate the APA community about the importance of early detection and provide support groups for those touched by the disease.
AANCART has worked with the American Cancer Society in providing a web portal for healthcare providers that contains culturally relevant education materials in 12 Asian and Pacific Islander languages.
But the linguistic barrier is just one of many challenges. Cancer affects the APA community in ways that many physicians might not realize.
“Most Americans suffer from the chronic kinds of cancer such as breast and lung cancers that take years and years to develop,” Chen said. “The kinds that affect [the APA community] are disproportionately from infections. For example, hepatitis B and the human papilloma virus.”
According to AANCART, the rates of new cases of liver cancer among Lao, Vietnamese, Cambodian and Korean men are nearly 12 times higher than those for white men. As for new cases of cervical cancer, Lao, Vietnamese and Cambodian women have rates two to three times higher than white women.
“Asian American women think we’re a healthy group, we’re eating soy and rice, but we can’t assume that because we’re the healthy minority that we can’t come down with cancer,” said Grace Yoo, an Asian American Studies professor at San Francisco State University. “Asian American women need to know their bodies and take action in their own hands.”
Yoo said cancer is affecting an increasing number of Asian Americans, particularly young Asian Americans, who might not have a family history of the disease and live a healthy lifestyle. These findings are very different than previous generations of the disease.
In the San Francisco Bay Area, the UCSF Vietnamese Community Health Promotion Project heads a public awareness campaign utilizing the Vietnamese-language press to inform the community. The organization has an aggressive outreach effort focusing on breast and cervical cancers in addition to hepatitis B and refers women to places that offer free mammograms and pap smears.
Project Director Thoa Nguyen, a first-generation Vietnamese American and breast cancer survivor, said despite the onslaught of education materials, old myths about the disease are difficult to dispel.
“In Vietnam, when you’re not sick, you don’t go to the doctor,” Nguyen said. “Some people think if you have cancer, it’s your fault, like you didn’t take care of yourself.”
Nguyen pointed out that many people who have cancer in Vietnam are diagnosed in a late stage, leading many to believe that the disease is always deadly.
No matter how hard researchers and health professionals work at debunking these traditional beliefs, they don’t seem to fully succeed.
Lei-Chun Fung, health education manager of the San Francisco Chinatown Public Health Center, said there will always be an influx of new immigrants who hold on to misinformation.
“Even though we have broken through all the barriers, California is still an immigrant community, and it will always have new immigrants coming in,” Fung said. “Some of them still hold a lot of myths—that cancer is contagious, cancer is a death sentence.”
Fifteen years ago, Fung piloted a six-week program that gave female Cantonese speakers an opportunity to share their fears and tribulations of being a cancer survivor. The bilingual, bicultural program was a success and continues to meet twice a month in Chinatown.
The women have grown into their roles as good listeners, helping fellow survivors navigate the challenges fighting the disease. The group has incorporated tai chi exercises and art therapy projects into their meetings. Some in the group have attended for more than a decade, wanting to stay connected while their cancer is in remission.
Nevertheless, Fung said taboos about cancer are still strong in the community. Some women don’t want to tell their elderly parents about the disease, fearing they will worry too much.
“Still, when some of these women see me on the street, they won’t talk to me because they don’t want their friends to know [about the support group],” Fung said.
Networks like the one that Fung leads are dependent on grants, and funding is becoming harder to come by. Still, Shinagawa maintains a healthy optimism, especially since more APA researchers are bridging the health disparity gap in their own communities.
Looking back at her own journey from diagnosis to the survivor’s conference, Shinagawa was reflective.
“It’s better,” she admitted. “But we have a long way to go.”
Comments
One Response to “An Unusual Cancer Burden: APAs battle both disease and taboos”
Got something to say?
what/who are APAs?