Ann Kilman and Jean Roberts became fast friends in a flash. Literally. Both happened to be visiting the Duluth office of a plastic surgeon, Dr. David Whiteman, in May of last year. Kilman had already stumbled through the worry, fear, and depression that often comes with a breast cancer diagnosis and was in for a postoperative appointment. Roberts had just received a cancer diagnosis, and her journey was beginning.
Whiteman sensed the two women might hit it off. So, the young doctor asked Roberts if she was interested in talking to a woman who’d been through breast surgery — someone who could, and would tell it like it is.
“Well, I really didn’t want to see her right then and there,” Roberts recalls. “It was the first time I was talking about the surgery, and I didn’t have the nerve to ask what I really wanted to ask.”
But Whiteman knew what was going through Roberts’ mind. He introduced her to Kilman and left the room. Kilman took charge.
“I don’t know what possessed me,” she says “but I just came out and asked her: Do you want to know what you’ll look like after the surgery?’ I’m a longtime teacher, so I said, ‘Let’s just do a little show and tell.’ And I just hiked up my shirt and flashed her.” In that moment, Whiteman informally initiated an innovative, and successful, cancer support group.
The connections, and friendships, that have emerged from Whiteman’s pairings have lasted for years. He and his patients are so taken with the buddy system that they may try to sway other local breast surgeons to try it.
“It’s actually amazing what it’s become,” says Whiteman, who opened his Southern Plastic Surgery eight years ago. “Ten of the women formed their own “cronies” group, and many want to be paired up with more new patients. They’re also talking about putting together a resource library on breast cancer at Gwinnett Medical Center.”
Despite a two decade age difference — Kilman is 51 and Robert’s is 70 — they’ve maintained a close bond over the past 18 months, Kilman came bearing watermelon and ice cream when that was all Robert’s could manage after she underwent a modified mastectomy and chemotherapy. Kilman also went to Rich’s and bought flannel sheets when Roberts told her the chemo made her shiver all night.
Now recovered and working part time at a Forsyth County library, Roberts often is Kilman’s rock. She’s there on the other end of the phone when Kilman just needs to let loose and cry. Or to commiserate over a “girls-only” lunch when Kilman wants to talk about things she knows Robert’s also experiences; numbness in the hands lingering since surgery or the sudden heaviness of the breast implants.
“Even though I have a very loving husband and many supportive friends, there’s some things they just don’t understand,” says Kilman, a sixth grade math teacher at Lanier Middle School in Suwanee and mother of two adult children. “If I feel like crying she lets me cry. I tell Jean things I never tell another human being. I just love her.”
Kilman, Roberts, and the other 20 pairings of buddies that Whiteman has coordinated over the past four years area a smaller-scale dose of a phenomenally successful adjunct treatment for surviving cancer support groups.
Research over the years have shown that women with breast cancer who enroll in support groups suffer less physical pain, cope better emotionally and live longer than those who do not use support groups.
When one of the first major scientific studies on the subject linked support groups to longevity in 1989, even the researching scientist admitted being stunned by the outcome. Using two groups of women with meta sized breast cancer who were receiving equally high-quality medical care. Dr. David Spiegel of Stanford University found that the women who attended weekly support groups lived twice as long as those who did not.
“I was shocked by the results,” says Spiegel, an associate professor of psychiatry and behavioral sciences. “We expected to improve the quality of life without affecting quantity. But we weren’t; prepared to find that the support groups actually helped the patients live longer.”
Spiegel’s findings were further advanced with subsequent research:
- A 1993 study of 68 people with melanoma found their survival improved when they learned coping skills in group settings.
- A 1999 Ohio State University study found that the breast cancer patients who had undergone surgery and were facing chemotherapy benefited from discussion groups headed by the psychologist. Levels of the stress hormone cortisol were far lower in these women than those who hadn’t received such help.
- Prostate and breast cancer patients who attended stress management sessions lived longer that similar patients who did not, according to a seven-year study released in 1998 by Pennsylvania State University.
Finding someone who knows what you’re going through isn’t hard in metro Atlanta. Cancer patients can be referred to hundreds of support groups via hospitals of doctors’ offices, friends or coworkers, the Internet or the Atlanta-based American Cancer Society’s extensive listings. Cancer support groups have evolved far beyond a one-size-fits-all mentality. Many focus on ethnicity, race, culture, religion, or sexual orientation. There are also groups for wives, husbands, partners and family members of cancer patients and for those who are primary caretakers of the terminally ill.
Cancer educational campaigns have followed their lead by targeting specific audiences. A Georgia state associate nursing professor, Linda McGehee in 1996 helped form the Atlanta Lesbian Cancer Initiative with breast cancer activist Dennie Doucher and Doucher’s partner, Sherry Hale, an oncology nurse. (Doucher died 3 years ago.)
“We were guided by the belief that lesbians who are diagnosed with any type of cancer need information and support.” McGehee. “Having an emotionally safe place to get and give support is imperative.”
This year the coalition formed a group for African American survivors of cancer. “A lot of black women are a lot more closeted. A lot of them may not even reveal to their doctors that they are lesbian,” says Lisa Diane White, who leads the monthly discussion groups. “We felt there was a need for the group because when women were calling to ask about the support group, they would specifically ask, ‘Are there any black women?'”
Camaraderie is not the only consideration. Many minority groups say bias is some segments of the health care system adds a burden in dealing with access to cancer treatment and in how doctors relate to them.
“You have to consider the prejudice out there,” says Cherie Evans, a 47 year-old Decatur woman diagnosed with cervical cancer four years ago. “Our partners are not recognized when they come visit in the hospital. We have to say things like our girlfriend is our sister. I found myself getting very emotional about what happened to me. I didn’t realize it, but I was holding a lot back that I needed to release. Now that we have it, I feel like we do need a place of our own.”
Bosom Buddies of Georgia, one of the area’s oldest cancer support groups started by an individual, has stepped up its efforts to reach Hispanic women. It has also expanded to include men with prostates cancer and is paring with Newcomers’ Network to educate refugees and other immigrants on cancer detection and services. Gladys Long holds informational sessions anywhere she can snag space to reach women she says aren’t attuned to be on the lookout for cancer.
“I’m Hispanic myself, and I know many Latina women don’t have the education or the awareness they should of their own bodies,” says Long, a longtime resident of Stone Mountain who grew up in Mexico City. “It’s not something that’s learned, how to do a self-examination of the breast. They think about their family before they think about themselves — more about their husbands, their kids, the food, what’s for dinner — before they think about taking care of themselves.
With 41 support groups in 19 counties, the nonprofit Bosom Buddies estimates it serves more than 1000 people in monthly support meetings and reaches another 400,000 through outreach and educational efforts. It was started by Vicki Castelberry in 1983 because she felt she was the only one in the world with breast cancer. Or so it seemed. “Twenty years ago, it was shhh…shhhh. People didn’t talked about it,” recalls Castelberry, 69. I didn’t know one person who had breast cancer. I felt so alone.
That sense of alienation is what prompted Whiteman, the plastic surgeon, to begin- quiet spontaneously – his own variation of community support.
“We just made it up,” he says of his staff, which helped come up with the buddy approach. “Four years ago, I was doing a consultation with a patient when I realized there was another patient in another exam room with a very similar story. So I dragged one of them in with the other and I left.”
Pairing women may help those who normally aren’t joiners, Whiteman says. “There’s lots of women who don’t want to sit in a basement of a church with 10 other women they don’t know,” he says. “So I’ll ask a new patient, “Would you like to talk to another women who’s already been through the surgery?”
Last month, Whiteman matched Kilman with another new and nervous patient. She, too, got the secret handshake. “Oh, yeah, maybe that’s my purpose for being on this earth,” Kilman says with a laugh, “so I could flash people.”
Patients need to know more
Information is vital when you are first diagnosed with breast cancer. “When you are first told, you just go on overload,” said Dacula resident Gail Toelle, 65, who wears a bandanna around her head to decorate the effects of her recent chemotherapy.
Another patient, Cindy Overton, 42, recalled, “You are just told where to go and what to do next. You don’t feel you have any ownership.” Talking to other patients came later for Toelle and Overton, but they wanted something more and something sooner to answer their questions. Cindy Snyder; director of breast cancer health services at Gwinnett Medical Center, follows up on the approximate 175 annual patients diagnosed with breast cancer and has witnessed the effect of a diagnosis.
“It’s hard to hear that word, “cancer,” Snyder said. “Whatever they hear after that word, they may not hear.” One patient told Snyder that she woke up at 3 a.m. remembering a question about breast cancer that she wished has asked. Snyder hears similar incidents from other patients.
Book answers questions
If every patient had the network’s “Your Breast Cancer Treatment Handbook,” by registered nurse Judy Kneece, patients and health professionals alike agree that the book would help.
“It gives them the information they need at the time when they need it,” Snyder said. Whiteman has just send out letters last week, asking for $25 donations for each of the 200 books he wants to purchase for the newly diagnosed.
The donation will allow donors to dedicate the book in honor of someone who had breast cancer on the bookplate inside the front cover. The books will be a part of the Gwinnett Hospital System Foundation’s breast cancer resource library at Gwinnett Medical Center.
Campaign expands breast cancer services
The Foundation has already raised $540,000 of its 2 million campaign to expand breast cancer services in Gwinnett, according to John Riddle, the Foundation’s executive director.
The first $400,000 paid for a screening mammography center to decrease the three-month wait for routine mammograms. The remaining $140,000 will go toward the $800,000 second phase of the campaign. That phase includes a resource library and an expanded center for diagnostic mammography.
“That’s where these books will be made available,” Riddle said. For more information about the Breast Cancer Survivors Information Network or their book drive, call Southern Plastic Surgery at 770-622-9100.
The Gwinnett Hospital System Foundation can be reached at:
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