An LI sisterhood for sisters facing breast cancer

When Linda Hart was diagnosed with breast cancer in 1994 at the age of 42, her doctor told her she wouldn't live to see the new millennium.

"She said I had less than five years to live," recalls Hart, who will turn 60 on Dec. 15.

Last month, 17 years after she was given that dire prognosis, Hart was among the survivors and supporters who took part in the Making Strides Against Breast Cancer 5k event at Jones Beach. She proudly walked arm in arm with her two daughters, three grandchildren and dozens of sisters -- not sisters by blood, but sisters, nonetheless.

Hart, of Massapequa, is the founder of Sisters of Greater Long Island (sogli.org), a support group for African-American breast cancer survivors, launched in 2001 under the name Sisters Network of Suffolk County.

The 57 members of the nonprofit organization, who range in age from their 40s to 80s, meet monthly in Babylon and quarterly in Huntington to share their triumphs and challenges as they ride the medical and emotional roller coaster that comes with a diagnosis of breast cancer.

At the group's October meeting, one of the original members, Susana Ifill, of Amityville, welcomed each Sister with a huge hug and an even bigger smile, proudly showing them the purple shawl she had recently finished.

"Knitting keeps me sane," she says with a laugh. Ifill, now 51, and Hart met when their children were in high school 11 years ago, shortly after Ifill's diagnosis.

"Our kids were talking and discovered that both their mothers had breast cancer," says Ifill. "They were the ones that put us together."

Both Hart and Ifill had tried other support groups on Long Island, and both say they had some positive experiences. But each also acknowledges they felt the discomfort that can come from being the only person of color in the room.

"When I was first diagnosed, I remember seeing a cover on Life magazine of 50 women with breast cancer, and there was only one black woman," says Hart. "I wondered if I was the only one in my community who had the disease."

What Hart discovered, through speaking at workshops and other events, was that she was far from alone. Modeling her group on Sisters Network Inc., a national organization for African-American women with breast cancer, which had a Nassau County chapter (now called Sisters of Greater New York), she started Sisters of Greater Long Island. Initially, it was formed to serve the African-American community in Suffolk, though there's no restriction on residence.

Hart says she wanted to create a place that would feel welcoming to black women who, like herself, may have thought they were fighting the battle alone. "We have shared histories, traditions and religious backgrounds that bond us in a way that is a true sisterhood," she says. Spirituality is a core part of the group, with each meeting opening and closing in a prayer circle.

Patricia Swinton, 54, of Massapequa, a 25-year survivor and the new president of Sisters of Greater Long Island, also participates in other support groups with women of all ethnicities, but, she says, "There is something special about being with women who share your heritage. And, because there are socio-economic issues, like lack of insurance, that put African-American women at greater risk of dying from breast cancer, it's very important that we work to reach out to our community."

Indeed, educating African-American women about the importance of regular screenings and follow-up treatments was Hart's main mission in starting Sisters. "We weren't getting as much information," she says. "Although it's improved since I was diagnosed, there is still a disparity."

Statistics from the American Cancer Society support her view. Although their risk for breast cancer is 6 percent lower than that of Caucasians, African-American women with breast cancer had a 39 percent higher death rate than white women between 2003 amd 2007. The cancer society attributed that to such factors as late detection due to a lower rate of regular mammograms (possibly because of a lack of health insurance). The society also cites "inequities in work, wealth, income, education, housing and overall standard of living, as well as barriers to high-quality cancer prevention, early detection and treatment services."

Denise Coleman, who was diagnosed nine years ago at age 40, also believes there has been a stigma in the African-American community that led some people to avoid doctors. "I'm not like that, and my kids aren't either, but my father and many in his generation are just not accustomed to getting regular checkups," she says. "That makes it even more important that we get the word out to our community."

Four-year cancer survivor Erica Hitch-Graham, 46, of Hempstead, agrees. "When some people are diagnosed," she says, "they don't even want to tell their families." Hitch-Graham, whose mother died of breast cancer at 49, says, "You want to be strong. But you need to tell people and encourage them to talk about it, and that's a big part of what our group does."

Another goal of the group is to give members access to treatment information. Cynthia Foulke, an oncology nurse at Huntington Hospital's Don Monti Center, has brought surgeons, oncologists and other experts to the Sisters' meetings. "It provides the women with a safe place to share their stories and get answers to important medical questions," says Foulke, an associate member of the group.

That was a big help to Cynthia Wood, 65, who joined the group in 2007. "I brought my pathology reports," the West Babylon resident says. "They were very technical and confusing, but there were knowledgeable people at the meeting who helped me decipher them and move forward."

Members often accompany each other to doctor appointments and treatment. For example, Ifill says that Hart stood with her through every step of her treatment, which has included chemotherapy and several surgeries. "She and other members have taught me to fight for myself," says the 11-year survivor. "I used to go along with whatever the doctor told me, but I learned to be my own advocate because of the group."

The Sisters also raise funds to help those who are facing financial strain as a result of their health issues. Monies go to help women who don't have insurance, or who have had to quit working because of their illness. Members also have given scholarship money for children of those who have lost their battle to the disease.

Meeting women, like Hart, who have survived breast cancer for many years, has made all the difference to Judy Walker, who was diagnosed four years ago. "It's made me so much more optimistic about my survival," says Walker, 61, of Wyandanch. "When I first came to the group, I thought maybe I had a year to live. But we have members who were diagnosed many decades ago, and they're still going strong."

The support continues, even when the meetings are over. North Amityville resident Pamela Isabell, 59, says many of the Sisters get together nearly every week for movies, lunches and other dates. When they don't see each other, they call. "We lift each others' spirits," she says. "If someone is down, we don't let them stay down."

These days are challenging for Hart. Her cancer has spread to her lungs and other areas of her body, and she decided last year to stop chemo. But her spirit remains strong. "My disease is progressing, and I don't think I'll have any more treatments," she says. "But every time things get worse for me, I'm better equipped to handle it, because I know my Sisters are there to support me."