In Some Cultures, Cancer Stirs Shame
By LUCETTE LAGNADO
When Mildred Wong received a diagnosis of breast cancer last year, she faced two tough decisions: what treatment to pursue and whom, if anyone, to tell about it.
Brooklyn's Maimonides Cancer Center takes pains to break through barriers to care among ethnic and minority groups.
In Mrs. Wong's native China, people often keep illnesses like cancer a secret. That tradition continues even here in America, where her family settled in the 1950s. Years ago, Mrs. Wong's infant daughter developed a brain tumor and her own mother insisted she tell no one. When the baby died, the grandmother tried to dissuade Mrs. Wong from attending the funeral, so great was the stigma.
Now, as she stares down her own health crisis, memories of her family's long-buried wounds are rushing in. "I came from a cultural background of stoic acceptance, saving face, keeping quiet," she explains.
Mrs. Wong, 60 years old, sought treatment at Maimonides Cancer Center, located on the edge of Brooklyn's booming Chinatown. Its patients are an ethnic tapestry of Chinese-Americans, Hasidic Jews from nearby Borough Park, Russians from Coney Island, Pakistani Muslims, as well as some Caribbean and African-Americans. Though starkly diverse, these groups often share strong beliefs about keeping a cancer diagnosis -- and possible treatments -- under wraps. The subject is such a cultural taboo that families have been known to shield loved ones from the seriousness of their condition. Some patients are reluctant to seek or heed medical advice; others even refuse to utter the word "cancer."
With ethnic minorities and immigrants fast becoming the collective U.S. majority, there is a push in medical circles to be more sensitive to cultural nuances. In 2001, the National Cancer Institute established the Center to Reduce Cancer Health Disparities to study why mortality rates for cancer can be so much higher for some groups than others. Only 71% of African-American women, for instance, survive for five years after a cancer diagnosis, compared to 86% of white women. Issues such as poverty, lack of access to care and inadequate care, are among probable reasons for the gap. But cultural factors, says the NCI center's director, Dr. Tanya Springfield, are now being recognized as a "significant" part of the problem.
Maimonides is among several hospitals nationwide attempting to hit these issues head on. In addition to dispensing medical advice to individuals, doctors routinely confer with family members, rabbis and other religious leaders as part of some patients' care. The facility has several Asian oncologists on staff who speak Chinese dialects fluently. As a nod to discretion, the center is located about a mile from the main hospital and lacks any overt signage referring to its true mission of cancer treatment. A back entrance and a special waiting room with frosted glass help visitors go undetected.
Staff at the four-year-old facility balance a complicated set of cultural mores and medical responsibilities. The range of attitudes "makes our job very difficult," says Dr. Yiqing Xu, a Chinese-born oncologist.
U.S. law dictates that patients be informed about their conditions and consent to all medical treatments. Those who submit to chemotherapy or other therapies are required to sign forms that spell out the drugs they are receiving, as well as possible side effects. However, consent forms tend to be in English, as Dr. Xu points out. And many families -- especially Chinese, Russians and Muslims -- often want their loved ones to know as little as possible about their cancer.
Sze Cheng's 72-year-old grandmother, born in China, was recently found to have advanced colon cancer. But Ms. Cheng and her husband have been determined to play down the true nature of her situation -- despite advice from a Maimonides doctor.
"We try to do what is best for her," explains Ms. Cheng, who says she loves her grandmother very much. "We talked about telling her," adds her husband, Sheng Lam. "But if we tell her, she will be upset -- she will go into a depression."
Oncologist Yiwu Huang says he worked with the family to explain the consent form to his patient. He says he told the woman, who does not speak English, that she had a growth in her colon, and that the chemotherapy was a "medication to try to prevent the disease from coming back." Still, "I avoided the word 'cancer,'" he says. He beseeched the family to be more direct, he says, but to no avail. "They said, 'please don't tell her,'" the doctor recalls.
"It is not uncommon in Chinese families to hide the news," notes Dr. Xu. But while she and other doctors may defer to families, some bristle at doing so. "It is not good for the patient," says Dr. Xu. "They don't have a chance to have a say in their treatment. It should be what they want, not what their families want." She pauses, then adds: "I may be too Americanized in my views."
Alan Astrow, Maimonides's director of Hematology-Medical Oncology, says that good medical practice calls for full disclosures. "But in many traditional cultures, crucial decisions are made by the patients' family -- we treat people from all over the world. Is there a conflict? Yeah there is a conflict." While it is necessary for doctors to follow the law, he says, it is also important that clinicians be mindful of the feelings and values of both patient and family.
The center's doctors have learned to modulate their vocabulary. For example, "we don't use the term chemotherapy," says Dr. Xu. Instead, she will merely say "treatment." To get around the "C" word, she might use substitutes such as "lesion" or "mass."
Many patients welcome the edited approach. Malka Friedman, a devout Orthodox Jew, prefers to avoid all direct reference to the disease. "The word is like a sword -- this is the way we were brought up," says Mrs. Friedman. Merely to say "cancer," she believes, could somehow give malignant cells more power to spread.
Upon learning that she needed a mastectomy, Mrs. Friedman added an unofficial member to her medical team. During an appointment with her breast surgeon, she placed a call to her rabbi and had him speak to the doctor.
"It was one of my first experiences with a rabbi calling and saying 'We have been praying over this and we have gotten guidance and we don't want major surgery to be done,'" Dr. Patrick Borgen, her surgeon at Maimonides, recalls. (He agreed to perform a less-radical procedure.) Now, he says he has learned to expect that rabbis will weigh in on medical decisions.
A gentle yet strong-willed woman, Mrs. Friedman's faith dictated she cover her head with a wig even before chemotherapy. She refers to Dr. Borgen, chief of breast surgery, as "a messenger of God." Still, the 61-year-old doesn't always do what he asks.
Dr. Borgen encouraged his patient to take a test to determine if she is a carrier of a particular genetic mutation -- one way to predict if a woman might be at a high risk for developing other cancers. He further advised that her female relatives have the same test.
She refused. Instead, Mrs. Friedman says she told her daughters and other kin to go for regular medical check-ups.
Cancer is considered to be something of a social blemish in the tightly-knit Orthodox community. Merely being seen entering or leaving a cancer center might spark rumors that could have profound repercussions for a family. A young person who has suffered from the disease, for instance, is generally considered an undesirable marriage partner. Cancer in a parent or sibling also could affect one's marital prospects.
Across backgrounds, the forces of denial don't discriminate. Over the years, several hospitals have worked to try to persuade African-American women to get early screening for breast cancer -- only to find that some won't come back even when told they have a tumor.
In Atlanta, for example, the Georgia Cancer Center for Excellence reaches out to black women at churches and health fairs. Such targeted efforts have yielded results: Patients coming in with advanced, Stage Four cancers declined from 16.8% to 9% between 2001 and 2005. Even so, anywhere from 7% to 10% of women found to have cancer either fail to return or don't stay through the entire course of treatment, according to Dr. Mitchell Berger, Chief of Hematology and Oncology at the center, a division of Grady Health System.
"There are so many myths that can influence a person's tendency to seek care or refuse care -- there are many examples from Harlem to Appalachia to Native America," says Dr. Harold Freeman, founder of the Harlem-based Ralph Lauren Center for Cancer Care and Prevention. The center is a joint venture of Memorial Sloan-Kettering Cancer Center and North General, a local Harlem hospital.
"We need to be careful. It is very tough to separate race from poverty from culture, yet you need to do that," he says.
Since arriving in Harlem in the 1960s, where he recalls seeing women with cancers so advanced as to be inoperable, Dr. Freeman has seen the need to address cultural points of difference.
One approach is to be mindful of patients' own myths and taboos -- then figure out ways to get them into treatment. At the Lauren center, for example, patients are assigned a "navigator" -- an employee charged with walking them through the different phases of their diagnosis and care. That can mean phoning people who don't show up for an appointment, or even knocking on their door at home if they go missing at any point during treatment.
Monica Williams, 70 years old, arrived at the Harlem center three years ago. Born in Grenada, Ms. Williams is a devout Catholic who says she had a premonition that she was ill. Years before her diagnosis, she recalls having a nightmare: "A voice said to me, 'You have cancer,' and I said, 'Get away from me, you devil.'" She remembered the dream when she learned she had colon cancer. She believed that God, not doctors, had the power to heal her.
Maud Colas, the patient navigator assigned to Ms. Williams, recalls painstaking sessions to get her to agree to treatment -- even while respecting her religious convictions. The feisty septuagenarian, herself a home health-care aide, at first wouldn't budge. Ms. Colas, who is also of Caribbean descent, appealed to Mrs. Williams to reconsider.
"I had barriers too, and I said, 'I also love God, but give our doctors a try,'" Ms. Colas recalls. She helped work out a solution: Mrs. Williams agreed to let the doctors perform surgery to remove her tumor -- while praying to God to guide them.
Ms. Williams, a proud woman who shows up to the center impeccably dressed -- she sported a pink gauze ensemble one recent afternoon -- has since endured numerous rounds of chemotherapy. All the while, she has continued her work. Yet still she harbors her secret, having told no one, not even immediate family, about her condition. When her hair started falling out as the result of chemo, she waved it off as a bad experience at the hairdresser. Asked if perhaps her husband and other relatives may have guessed the truth, she replies only: "Maybe."
Ms. Williams's cancer was fairly advanced when she was diagnosed. Then a lesion was found in her liver and she needed more surgery. As of now, says Dr. Freeman, there is no evidence of the disease. Ms. Williams says she has made her peace with human medical interventions. "I ask God to lift me up," she says.
As for Mrs. Wong, she came to a major decision this year: She would be more American than Chinese in dealing with her breast cancer. She couldn't forget how desperately alone she had felt when her baby was ill. "I didn't tell anyone, and no one came to visit," she says. In the months when the infant lay in a hospital, friends and relatives heard only that she suffered from a cold.
When she was first diagnosed with breast cancer, she sought a second opinion at Maimonides. The news was hard to bear. Given that the cancer had spread to a lymph node, Dr. Borgen, her surgeon, suggested treatment that would include a single mastectomy as well as chemotherapy.
Instead of keeping her fears about breast cancer bottled inside, she reached out to friends, both Chinese and American. She also leaned on members of her Baptist church where she and her husband are active. She has even attended a few meetings of a Chinese cancer support group. Without the burden of her mother's insistence on secrecy, Mrs. Wong says she was strangely liberated. "I felt totally different this time because of the love and support of my friends," she recalls. "They came over and cooked and shopped."
After surgery came a grueling round of chemotherapy. She still recalls the horror of seeing her hair fall out. She took an American step she had heard was "empowering." She shaved her head.
"You do feel better," afterwards, she says, adding that she went and bought a couple of wigs. She still wears one of them, even though her treatment is finished. "My prognosis is very good, and I am very grateful."