Chinese cancer survivors not only fight the disease, but often the disgrace of their ancestors. To many Chinese, cancer may be viewed as an ancestral payback for something bad done by the survivor or family members. This heavy, silent burden, as well as language barriers, can shame Chinese cancer survivors from getting the help they need.

"To the Chinese everything has something to do with your ancestors, good or bad. This is difficult to break. Even for those with no language barrier, there are still cultural barriers," said Ming-der Chang, PhD, executive director of the American Cancer Society (ACS) New York Chinese unit in Flushing.

In the Chinese culture, she explained, many women put the family welfare ahead of their own and don't take care of themselves. They don't make treatment decisions without their husband and sons, but often the spouse doesn't want to talk about it.

Education is helping to bring about an openness about cancer to the very private Chinese culture in some parts of the US.

The five Chinese units of the American Cancer Society (ACS) in New York, New Jersey, and California are reaching out to their communities. Chinese radio and television broadcast weekly ACS programs in Cantonese and Mandarin. Information written in Chinese is placed in Chinese newspapers and on the ACS Northern California Chinese Web site. And ACS Chinese support groups focus on the survivors and their families.

Wendy Louie, a nurse, was well aware of the language and cultural barriers of her Chinese patients. But her own diagnosis of breast cancer in 1998 came as a big shock. "I've been a nurse for so long, I never thought I'd be a patient," she said. She had a mastectomy (removal of the breast), breast reconstruction, and chemotherapy.

"Even with my nursing background, when I was first diagnosed, I was confused and upset," Louie said. Luckily, she had a very supportive husband and family, which other Chinese women may not have.

Louie was directed to the ACS New York Chinese unit. When she became a volunteer and met other survivors, she became much more at ease. "The emotional support is so important," she said. "When you see survivors of five years, 10 years, it's like seeing your future."

Louie is now chair of the ACS New York Chinese breast cancer survivor support group formed in 1999 by Lucy Young, known affectionately as the Joy Luck Club. Although their Chinese words (kai wai) for the "club" are different, it's nicknamed for the popular book by Amy Tan, in which four Chinese mothers meet weekly to play mah jong, and help each other as their daughters grow up in America.

ACS support groups (also through Reach to Recovery) help many new immigrants just diagnosed who don't speak English. Getting cancer information in Chinese is difficult, but ACS has a lot of translated booklets for them, Louie said.

The support group addresses the cultural barriers where Chinese cancer survivors may think they are being punished or think it's contagious, and must keep it to themselves.

Whether a new immigrant with no family, or a woman with a large family yet fearful they will turn away from her, the result may be the same — keeping their problems to themselves and getting very depressed, said Louie.

Also, the doctor is the authority to the Chinese, she said. "Whatever the doctors say, they will listen, but they don't dare ask questions. They keep the uncertainty inside."

Members of the ACS Chinese unit visit doctors' offices and hospitals, so when Chinese patients are diagnosed, they will refer them. Then Louie gets in touch by phone, addressing their concerns, and has even received calls from worried patients late at night. She invites them to the support group meetings.

The monthly meetings feature speakers — breast surgeons, oncology nurses, and dieticians. There are 500 in the group with about 25 in attendance. Four annual events are sponsored.

In the beginning, the new patients are very reluctant and don't want to talk. "After a while, they know you're a survivor and you've had the same problem," she said. "They become more open, they talk more, and become more relieved.

"So often when you first meet them, they are upset. But when they leave, they can even smile," Louie said.

"Knowing you are not the only one helps acceptance and makes treatment much easier," said Jming Wang, MD, internist and medical oncologist, a breast cancer survivor and a member of the support group. "At the Joy Luck Club, we're like sisters," said Wang. "Many of us are in the same age group, 45 to 55, some younger, some older. We can share feelings, and we have a lot of fun. We dance, we sing, we take trips," said Wang.

The ACS New York Chinese unit helped 2,500 Chinese women get mammograms in the last two years, said Nancy Liao, director of cancer control for the unit. They make arrangements with nearby clinics or hospitals for free screenings for mammograms and pap smears.

Reaching the five boroughs of New York City, Long Island, and the tri-state area of New York, New Jersey, and Connecticut, the "Voice of the American Cancer Society" is radio broadcast in Mandarin (1240AM) and Cantonese (1480AM) on the Chinese American Voice, Inc., and the Chinese Radio Network.

These weekly 30-minute programs feature information about nutrition, doctors talking about different cancers, and activities.

The Sino Television, Inc., runs every other day a three-minute presentation by the ACS. Monthly articles are published in the Chinese newspapers.

Since opening in 1993, the New York Chinese unit has made many gains. Through education in the media and attention of survivor celebrities such as singers from Taiwan, more Chinese people in the US are talking openly about cancer, said Chang.

Much needs to be done, said Louie, especially to give knowledge of prevention and early detection. "We want Chinese women to know the importance of breast health, early detection, and early treatment. If diagnosed with breast cancer, they can come to us for support," said Louie.

New York Chinese Unit
Flushing: 718-886-8890

New Jersey Chinese Units
Fords: 732-225-8588
Parsippany: 973-334-2249
Shrewsbury: 732-224-8868

Northern California Chinese Unit
Fremont: 510-797-0600