Shyanne Reese prefers to call herself a "conqueror" rather than a survivor of breast cancer. She revels in her personal triumph, defeating the foe that threatened her life in 2008, and is now moving forward with poise and purpose.
However, Reese didn't always feel so confident. In fact, as an African-American, she says cultural myths long held her back from seeking treatment or even giving herself breast exams.
"Culturally, it's been taboo to discuss cancer in the African-American community, so a lot of women suffer in silence or don't seek treatment when they should," said Reese, 59, who works in the insurance industry and volunteers as a community health advocate for the Women's Cancer Resource Center in Oakland. She reaches out to women at churches and health expos, leading the center's Sister to Sister support group for black women and even helping them navigate the health care system. "And I had my own personal battles. My mother had instilled in me a belief that it was wrong or sinful to touch myself, so I had never done self exams."
Indeed, as health advocates work to draw attention to the disease for all women during October's National Breast Cancer Awareness Month, many point to recent studies -- such as one from Sinai Urban Health Institute in Chicago, which examined statistics from 25 major U.S. cities -- that confirm a fact physicians and advocates have known for decades: while Caucasian women have a higher incidence of breast cancer, women of color are more likely to die from it, chiefly because of cultural, social and economic factors that lead to late detection and treatment.
"There's a history of silence around cancer in the African-American community," said Peggy McGuire, executive director of the Women's Cancer Resource Center, which provides programs for low-income black women and Latinas. "Part of the problem is that they see themselves as the caregivers of the family and put themselves second. There's a reluctance to admit they are ill."
In addition, many say there's embarrassment and guilt -- as though a woman has done something to cause the disease. That combined with a "what I don't know won't hurt me" mentality is a recipe for avoidance behavior.
"There's also distrust of the medical community," McGuire said. "And, of course, poverty is the most significant factor because women likely lack health insurance, have poor nutrition -- even just living in neighborhoods with violence is a factor. The stress accompanying that has a significant effect on immune systems."
At Latinas Contra Cancer in San Jose, advocates have encountered unique cultural barriers for Latino women.
"For Latinas, cancer is often seen as a death sentence. It's kind of, 'If I've got it, that means I'm gonna die, so I don't want to know,' " said Ysabel Duron, Latinas Contra Cancer founder, KRON-TV news anchor and a cancer survivor/conqueror. "And there are religious barriers. Some see it as a punishment from God, that they must have done something wrong and deserve it. Or they'll say their husbands won't let them get a checkup -- no other man should be touching them.
"These are the things we try to break through. It's really about getting into those communities and literally taking them by the hand and navigating them through this."
Angelica Nuno, 24, of Oakland, did just that with her aunt a few years ago, helping her with translations, filling out forms, sitting with her in the doctor's office. Nuno now volunteers as a community health advocate for the Women's Cancer Resource Center.
"I saw how hard it was for my aunt with the language barrier, so I wanted to help," she said. "A lot of women in that situation are scared to even approach a hospital. They don't know you can get free mammograms and support."
While the medical community is learning more about societal issues affecting Latinas and African-American women with breast cancer, even less research has been done for Middle Eastern, Pacific Islander or other groups, Duron said.
"They're where African-American and Latinas were 15 years ago as far as research goes," she said.
Advocates in nonprofit assistance organizations hope health care reform will address some of the disparities in mortality rates by increasing cultural sensitivity training for mainstream care providers, Duron said. In the meantime, much of that kind of support falls to independent groups. And to volunteers like Reese.
By 2008, Reese was making big changes in her life. She had reached her weight-loss goal, dropping 101 pounds. And through her increasing education about women's health, -- which she said she had to go outside her family to find -- she had finally become comfortable with self breast exams.
"Something felt different," she said. "I didn't know if it was because of the weight loss. But going in to get it checked out -- I still felt embarrassment and guilt, like maybe I had caused this myself somehow because of carrying the weight for so long."
When her cancer was diagnosed, the same week she was laid off from her job, she was asked at the hospital if she wanted to have a social worker as a support person. She said no.
"It was all just overwhelming, and when I did decide I needed support, I wanted someone who looked like me, but there was no one available. It was so embarrassing to say that I needed help that way. African-American women are taught they don't need help and suffer isolation sometimes. So the challenge was to say, yes I want help."
Reese, who had surgeries on both breasts, has been cancer-free for nearly three years now.
"For me, breast cancer has been a gift," she said. "I knew I had a purpose in life, and it's finally been revealed -- to do what I do now, to reach out and help other women."
Women's Cancer Resource Center, Oakland:
Volunteers and staff provide information on prevention and early detection, and offer outreach to communities throughout the East Bay. 888-421-7900 or 510-420-7900; www.wcrc.org
For assistance in Spanish: 510-601-4040
Latinas Contra Cancer, San Jose:
Provides support services and resources for Latino cancer patients and families. 888-522-8110 or 408-280-0811; www.latinascontracancer.org
Bay Area Breast Cancer Network
A nonprofit committed to finding the cause, prevention and cure for breast cancer through education, support and advocacy. 408-261-1425; www.babcn.org
For assistance in Spanish: 800-986-9505