PHILADELPHIA—The educational and support group Living Beyond Breast Cancer has released its second culturally sensitive breast cancer resource and education guide.
As noted at a ceremony here announcing the publication, the 80-page bilingual book—Celebramos el Mañana: Latinas que Sobreviven el Cáncer del Seno (We Celebrate Tomorrow: Latinas Living Beyond Breast Cancer)—was developed for the increasing number of Latinas being diagnosed with breast cancer.
According to the American Cancer Society's most recent statistics, breast cancer is the leading cause of cancer death among Latinas and the most commonly diagnosed cancer among these women. Latinas use screening tests like mammography less often and have five-year survival rates that are lower than other ethnic groups.
The launch event for the new guide was to have included Philadelphia Mayor John Street, but he had to cancel at the last minute due to pressing labor negotiations. Not that any of the nearly 100 attendees seemed to mind, especially since special guest speaker pop singer Soraya, a Latin Grammy award winner and breast cancer survivor, was set to speak and sing in alternating English and Spanish.
Celebramos el Mañana was created by Living Beyond Breast Cancer to address cultural barriers and issues faced by Latinas with breast cancer. The three-year collaborative project used an advisory committee of more than 30 Latina breast cancer survivors and the medical professionals who work with them to express the attitudes, beliefs, and values of Latinas who are often reluctant about getting appropriate medical treatment.
The project also involved a needs-assessment survey, three focus groups comprised of 35 Latina survivors and support people, and hiring a coordinator, Aracely Rosales, a specialist in bilingual, low-literacy resources.
One half of the book is written in Spanish with the other half, available by flipping the book vertically, in English. Making use of human-interest stories, interviews, medical advice, and resources, We Celebrate Tomorrow includes information about diagnosis, treatment options, clinical trials, bilingual resources, and a bilingual dictionary of relevant breast cancer terms.
Many of the women in the audience were part of the focus groups or featured in the book that was funded in part by 13 different philanthropic and private organizations.
Not Just a Translation
Evelyn Gonzales, MA, the Partnership Project Manager for the NCI Cancer Information Service (CIS)'s Atlantic Region and one of the collaborators, said the book differs from other Spanish-language resources because it is not simply a translation from an English version but is an original resource that reflects the input and feelings of the focus groups involved during the book's initial development.
“It was an enriched project that caught the sentiments of the Latinas involved,” Ms. Gonzales said. “Living Beyond Breast Cancer is a CIS partner,” and our service helped pull together the advisory committee and content including information about clinical trials and technical resources.
“This was a local and regional partnership with national implications, and the CIS will help develop evaluation and dissemination plans.”
Celebramos el Mañana had an initial press run of 30,000 copies. Single copies will be distributed free to Latinas who have been diagnosed with breast cancer, and health care providers can purchase books at a bulk rate to give away to their patients.
Colombian-born singer and songwriter Soraya wrote Spanish and English introductions to the book. At the event, she spoke with warmth and humor about her own experience of being diagnosed with Stage 3 breast cancer in 2000 at age 31. She had previously lost her mother, grandmother, and aunt to the disease, and following three years of treatment, she resumed her career last year with the release of her album Soraya, which includes the song “Casi,” in which she sings, “Why me, why now, why this?”
The Latina resource guide is the second publication Living Beyond Breast Cancer (LBBC) has published that has been tailored to meet the specific cultural needs of its readers.
In 1998 the organization produced Getting Connected: African-Americans Living Beyond Breast Cancer, which has been distributed to more than 60,000 people, and received awards for excellence in patient education materials from the American Academy of Family Physicians and the Society of Teachers of Family Medicine.
LBBC Executive Director Jean Sachs, MSS, MLSP, said the national nonprofit organization—founded in 1991 to empower all women affected by breast cancer to live as long as possible with the best quality of life—first recognized the importance of outreach in 1995 when it received its first Pew Grant.
“Since then we've been making an effort to reach the underserved so they too can learn to live beyond breast cancer,” she said, noting that future projects in the Philadelphia area might be tailored to Asians and Russian immigrants.
Further information is available at Living Beyond Breast Cancer's Web site, www.lbbc.org