May 5, 2008--We've all been touched by breast cancer, whether we've personally experienced the disease or have a relative, good girlfriend or co-worker who has faced this challenge. We react with a range of emotions and responses to the news that a loved one has breast cancer. Many women hear the news and are spurred to action. They want to do something to honor their loved ones or make sure that others don't have to face breast cancer in the future. To date, more than 45,000 women whose sister has had breast cancer have taken action by joining the Sister Study, a nationwide effort to find the causes of breast cancer. The Sister Study is especially urging African-American women to join the study so we can learn what causes breast cancer in the African-American community. 

Conducted by the National Institute of Environmental Health Sciences, one of the National Institutes of Health of the U.S. Department of Health and Human Services, the Sister Study hopes to learn how the environment and genes affect the chances of getting breast cancer. In all, the study needs 50,000 women whose sisters had breast cancer, and we can't do it without the participation of African-American women whose life experiences and exposures may be different from those of other women. The Sister Study has successfully recruited more than 45,000 women whose sisters were diagnosed with breast cancer, but only 4,500 of those women — one out of 10 — are African American. Between now and the end of the year, the study is focusing on recruiting African-American sisters, along with Hispanics, Asians, Native Americans, Alaska Natives and Pacific Islanders. Because women over the age of 65 or with a high school degree or less are also underrepresented in the study, white women in those groups can also still join the Sister Study.

Without black women, we will have a hard time learning why breast cancer occurrence and survival are different for black women, who often develop the disease at a younger age and have more aggressive tumors than white women. Even though white women are more likely to get breast cancer, black women are more likely to die from it. Black women of all ages and walks of life are at risk for this disease, and the factors that increase a woman's chances of developing or surviving breast cancer may differ for African American and white women. Sisters of women with breast cancer are twice as likely as other women to develop breast cancer, possibly because of shared genes and experiences.

Dr. Doris Browne, Sister Study participant and program director in the Breast and Gynecologic Cancer Research Group in the Division of Cancer Prevention at the National Cancer Institute, enrolled because two of her sisters were diagnosed with breast cancer. "Awareness and early detection are key to fighting breast cancer, as well as taking action by participating in important research," says Dr. Browne. "It is vital that more women of color, like me, take the time to enroll in the Sister Study so that future generations of women won't have to face the disease."

When diagnosed, most women ask, "Why and how did I get this disease? Is it something I did or was exposed to?" Unfortunately, as of today, there is no clear answer. Wouldn't you like to know if breast cancer is caused by something women come in contact with at work, at home or in their communities? That's what the Sister Study is trying to answer. 

The Sister Study is a long-term study, but participants are not required to take any medications, undergo any treatments or make any changes in their daily lives. The study itself requires very little time from its volunteers, although there is more to do at the beginning than in future years.

The Sister Study has made participation as convenient as possible. At the beginning, women will answer telephone and written surveys and provide blood, urine, household dust and toenail samples during a home visit. The study is the first of its kind to collect such extensive and detailed information about environmental exposures. After that we'll contact participants once a year for 10 years or more to learn about changes in their health, lifestyle or environment.     

Women in the U.S. and Puerto Rico, ages 35 to 74, may be eligible to join the Sister Study if their sisters (living or deceased) had breast cancer. Women who join the Sister Study must never have been diagnosed with breast cancer themselves. At this time, we are enrolling women only from groups that are underrepresented in the study to date. If you're a woman of color whose sister had breast cancer, your participation in the Sister Study is especially important, and you are just who we are looking for. We want to learn more about what can be done to prevent this devastating disease from putting our daughters and granddaughters at risk.

The Sister Study follows sound, ethical research practices, gives frequent study updates to participants and keeps all personal data private and confidential. The researchers for the study are primarily women.

How can you help? If eligible, you can join the Sister Study or simply spread the word to other women about it. Joining the Sister Study and obtaining information is easy. Please visit www.sisterstudy.org or call the hot line toll-free at 1-877-4-SISTER (474-7837) from 9 a.m. to 9 p.m. Eastern time. As our motto says,woman by woman … sister by sister, we can make a difference.

Dale Sandler, Ph.D., is principal investigator of the Sister Study. She is chief of the  Epidemiology Branch of the National Institute of Environmental Health Sciences at the National Institutes of Health.

Also on The Root:

Terri Nimmons writes about being diagnosed with breast cancer, years after her sister was.  Linda Villarosa explores whether the black women and breast cancer link is attributed to genetics, environment or both.

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