Sisters in fight to cure cancer
A 1972 Ringgold High School graduate, Guinto had been diagnosed with breast cancer four years earlier and endured many ups and downs during treatment. After a 1992 bone marrow transplant, Barnes said her sister's diagnosis was bright. But a year later, the cancer returned.
Barnes described her sister as a "people pleaser" who kept her relapse a secret until her failing health required hospitalization.
"She felt like she let everyone down," said Barnes, whose mother, Ann Barnes, lives in Venetia. Her father, Frank Barnes, died in May.
Although more than a decade has passed since her sister's death, Barnes keeps her memory alive and helps in the battle to find a cure for breast cancer.
Barnes is a member of the Sister Study, the nation's largest research effort to find the causes of breast cancer. The study is being led by the National Institute of Environmental Health Sciences, which is hoping to enroll 50,000 women whose sisters had breast cancer.
The Sister Study must meet its enrollment goal by year's end, and must find 19,000 more people to join the cause. About 1,500 Pennsylvanians are enrolled in the Sister Study.
According to the study, this year approximately 8,860 Pennsylvania women will be diagnosed with breast cancer.
Barnes, a retired union sprinkler pipe fitter and vice president for the Coalition of Labor Union Women, learned about the study at a convention in 2005. That's where she met Sarah Williams, who recruits American Indian women and women working in trades.
Barnes said she was eager to join after she learned about the study.
"To me, it was a gift that there was something I could do for my sister," Barnes said.
Barnes distributes Sister Study brochures and information to everyone she meets. One of 10 children, she is recruiting her six sisters.
Study organizer said they need more women like Barnes to step forward.
Since its national launch in October 2004, the study has attracted 31,000 participants.
"Many women have heard about the Sister Study, but they haven't signed up yet, and we really need them now," said Dr. Dale Sandler, chief of the National Institute of Environmental Health Sciences epidemiology branch and principal investigator for the study. "Doctors know very little about how the environment may affect breast cancer. That is why the Sister Study is so important. We hope women will make that call today."
Joining is simple, Barnes said. The 10-year observational study begins with participants answering questions about diet, jobs, hobbies and things to which they have been exposed throughout their lives. The goal is to determine what might influence breast cancer risk.
Later, a female health technician collects small samples of blood, urine, toenail clippings and house dust, all of which provide researchers better pictures of the woman's environment and genes.
Women in the United States and Puerto Rico, ages 35 to 74, might be eligible to join the study if their sisters, living or dead, contracted breast cancer.
Women who join the study must never have been diagnosed with breast cancer themselves. The researchers are seeking women of all backgrounds, occupations, ages and ethnic groups.
"If you're a woman of color whose sister had breast cancer, your participation in the Sister Study is especially important," Sandler said. "We want to learn more about how to protect your daughters and your granddaughters from this devastating disease."
Organizations in partnership with the study comprise the American Cancer Society, National Institutes of Health's National Center on Minority Health and Health Disparities, Sisters Network Inc., Susan G. Komen Breast Cancer Foundation, the Y-ME National Breast Cancer Organization, and the Intercultural Cancer Council.
In addition to working with its national partners, the study works with local, regional and national organizations to inform diverse women about the study.
Barnes said she will continue to keep her sister's memory alive.
"She's gone, but certainly not forgotten," she said of her sister.
To volunteer or learn more about the study, go to www.sisterstudy.org, or call 1 (877) 474-7837. The hearing-impaired should call 1 (866) 889-4747.
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