Research on breast cancer and sisters needs more women of color

Ever since they were children, Connie Orr has adored her older sister.

When the two were young, Sherrill Jackson would walk little Connie to class, bring her along on dates to the drive-in and let her tag along to sleepovers at friends' houses.

They've supported each other through marriage, children, divorce, re-marriage and the deaths of both parents.

Now, they're taking on breast cancer - together.

Jackson, 60, a 15-year breast cancer survivor and pediatric nurse practitioner in St. Louis, fought it head-on and now leads a 75-member breast cancer support group. Orr, 56, of Novi, Mich., is fighting the disease in a different way: She signed up to take part in the Sister Study, a national look at the sisters of women who have or have had breast cancer.

She's among 39,000 women who have signed up so far and one of 2,324 black women enrolled in the study. As the study enters its final months of recruitment, getting more women of color like Orr to participate is key.

The study's aim? Find out what causes breast cancer - and how it varies among women of different ethnic backgrounds.

Nearly 180,000 women annually in the United States are diagnosed with breast cancer and 41,000 die from it.

As part of the 10-year-long study, Orr will answer questions every other year about her health and habits. She already filled out questionnaires when she signed up last year and has had a health professional visit her home to give her a physical.

Signing up for the study was a simple yet significant way Orr felt she could help.

"You may think you understand ... but you can't reach out to them like another survivor can," Orr said. "The Sister Study is the only meaningful thing I can do to help. I feel, in some ways, I've helped all women."

But in order to better understand how a woman's habits, environment and genetics contribute to her risk for breast cancer, researchers need more women like Orr to step forward.

With five months left for recruiting, the study is 11,000 women short of its goal of 50,000 participants.

More troubling to researchers is that only 12 percent of the 39,000 women recruited so far are minorities.

"We really want the study to be representative of the women in the United States," said Lisa DeRoo, an epidemiologist for the Sister Study. "We do know that the incidence of the disease and survival rates vary from group to group. ... Part of the reason why it's so important to recruit a diverse group of women is that we want the results to benefit the different women across the United States."

Black women, for example, are less likely than white women to get breast cancer, but they are more likely to die from it. Some studies suggest that this is because black women are more likely to be diagnosed when their tumors are more advanced.

Gaining a better understanding of such differences is one of the study's key aims.

Getting the word out about the study has been challenging. Too often cultural inhibitions and language barriers prevent many women from learning about their cancer risk or from participating in projects like the Sister Study.

Recruiters at the national level have mostly relied on cancer registries in each state to reach breast cancer survivors.

They've also sent mailings to sororities and contacted organizations like the Barbara Ann Karmanos Cancer Institute.

The Sister Study faces many of the same difficulties in recruiting minority women that local organizations do in preventing and treating breast cancer, said Dr. Adnan Hammad, director of the Community Health and Research Center for the Arab Community Center for Economic and Social Services in Dearborn, Mich.

When Hammad started a breast and cervical cancer screening program for Arab women in metro Detroit in 1996, health workers conducted an estimated 5,000 home visits to talk to women. Only 50 women agreed to be screened that year. Many women they talked to lacked knowledge of cancer and were hesitant to be screened for because of privacy concerns.

Now more than 2,000 women receive breast and cervical cancer exams annually through the program.

Hispanic women also visit the center, Hammad said.

"We have done tons of work in the area of cancer screening," Hammad said. "And the survivor rate is becoming so strong ... but to some cancer is a taboo, it's a curse, it's a punishment."

DeRoo said another challenge to recruiting women for the Sister Study is the 10-year commitment.

For many, it takes watching a loved one deal with breast cancer to spur interest in a long-term endeavor like the Sister Study.

That was the case for Ursula Powell, a 37-year-old black woman from Michigan.

She has watched two great-aunts die from breast cancer and her mother's sister struggle with it. That was enough to put her on a mission to increase awareness of the Sister Study, which she hopes will be a step toward preventing cancer.

She keeps stacks of Sister Study brochures in her van, ready to hand out wherever she goes - doctors' offices, church and community health fairs, pharmacies, beauty shops and makeup stores.

It's something she's done for more than a year, even though Powell herself can't sign up for the study because none of her sisters has had breast cancer.

Perhaps her biggest outreach, however, has been to her mother and four aunts living in metro Detroit, all of whom were shaken when their sister Twila Sneed, who lives in Pennsylvania, was diagnosed with breast cancer four years ago.

Powell urged them to join the Sister Study.

The women hope the study will be a breakthrough in understanding why some families are especially hard hit.

Powell's aunt Tamara Jackson said she signed up not only because of the family's history, but also for its future. The more that is known about breast cancer, the better younger generations will be equipped to deal with it.

"I have a 12-year-old daughter," said Jackson, 43. "If I can do something to prevent it for her, I'm going to."

While joining the study is one way for many women to show love and support for their sisters, it's also a sign of solidarity with other women.

"It's bigger than me and it's bigger than my sister," Orr said. "My sister has already gone through the experience of breast cancer. Her attitude and my attitude is this is for women who don't yet have cancer, and maybe this will shed some kind of light that they never will get cancer."



The Sister Study - a long-term breast cancer study conducted by the National Institute of Environmental Health Sciences - is focused on women whose sisters have or have had breast cancer. This is the final year for recruiting participants; the study still needs about 11,000 more women. Women of color and those ages 65-74 are especially needed.

Participants must be between 35 and 74 years old and have never had breast cancer.

Researchers plan to track the women for at least 10 years, studying how environmental and genetic factors contribute to breast cancer. Women will be asked to answer questions about their health through phone interviews every two years and undergo a physical when they sign up.

Study participants will not be paid.

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Number of women in the United States and Puerto Rico: 39,059



Gender: Women are more at risk than men.

Age: Risk increases as women get older.

Family history: Risk is higher among women whose close relatives have or have had the disease.

Race: White women are more likely to get breast cancer. Black women are more likely to die from it. Asian, Hispanic and American Indian women have a lower risk.

Children: Women who have not had children have a slightly higher risk.

Breastfeeding and pregnancy: Having more children and breastfeeding longer lowers risk of breast cancer.

Birth control pills: Women using birth control pills may have a higher risk; women who stopped using the pills more than 10 years ago do not seem to have any increased risk.

Hormone replacement therapy: Long-term postmenopausal hormone therapy increases chances of breast cancer.

Alcohol: Women who have 2 to 5 drinks daily have 1 ½ times the risk of breast cancer as women who drink no alcohol.

Source: American Cancer Society,