"But I am a social worker and I know how important support groups are to recovery," she explains. "I know that it really helps to see that you are not alone. I was looking for that support. I needed that support."

So she tried another group, this one geared to breast cancer survivors who had chosen breast reconstruction. This group met in a bright room with about 30 survivors sitting in a huge circle of metal folding chairs. Nikki was the youngest by far; many of the women there could have been her mother or grandmother. Within an hour, though, Nikki felt connected with the group. These women had gone through similar experiences and were upbeat. "They were just eating up life," Nikki says and she returned to the group for months.

Common wisdom has long held that support groups help women deal with breast cancer both emotionally and physically. Indeed, a 1989 study actually found that women in support groups live twice as long as women not involved in a group. Subsequent studies have not found a physical benefit to support groups, but they note that groups offer tremendous emotional advantages.

Sharon Heyden, who runs a twice-monthly cancer support group out of her store, Sharon's Wigs in Bryon, Ohio, sums it up nicely. "Support groups offer connections." At least once a month, Heyden invites speakers ranging from oncologists to gardening experts to meet with the 15 to 20 women typically in attendance. "I know the group went well when I look out the window after the meeting and there are two or three women talking in the parking lot. Because they connected."

Benefits of Support Groups

While building connections may be the most important benefit of support groups, it is not the only one. Breast cancer survivors who join support groups often have an easier time handling their pain and symptoms than those who try to go it alone. In addition, support groups can decrease the depression, trauma, and stress associated with the disease. They can help women share information about treatment, symptom management, and other topics and they improve the overall quality of life. Discussions often range from the practical - what to do about swelling - to the metaphysical - how to think about end-of-life issues.

"I joined a support group of women who choose reconstruction," Nikki says. "And women helped me make decisions and even lifted up their shirts to show me their reconstructions. They really helped me figure out what to do."

But support groups are not a panacea. "Support groups aren't for everyone," Nikki says. "My husband tried a support group for spouses of breast cancer survivors and he didn't like it at all."

Others find the group experience frightening. "I was reluctant to go to a support group," explains Jo Holz, marketing executive and current president of the SHARE Cancer Support Board of Directors. "I felt like I was trapped in a bubble of misery and terror and I didn't want to go listen to other people's sad stories." But she went, albeit reluctantly, and found that "that SHARE group saved my life." As a result, Holz went on to facilitate a support group for SHARE, to volunteer for the organization, and ultimately to serve on its Board of Directors.

Types of Groups

Support groups for breast cancer and other diseases and medical conditions have proliferated, so it is easier than ever to pick the most appropriate - and most helpful - support group for your personality, situation, and emotional needs. There are groups for the recently diagnosed and for those in remission. There are groups geared to young survivors and others for older women. There are support groups for lesbians, for African Americans, for Ashkenazi Jewish women, and for friends and family of women with the disease. There are even support groups that have no formal sit-down-and-talk component but rather emphasize physical activity (see page 22).
Just about every support group has a facilitator, but these leaders vary. Some groups are run by social workers, who emphasize discussing feelings, some are led by nurses and focus on medical topics while other groups are facilitated by survivors who can offer their own experiences and personal insights, explains Sandi Kafenbaum, Coordinator of Counseling Services for Adelphi Breast Cancer Hotline and Support Program, New York.

Georgia,* a healthcare administrator, for instance, benefited from a support group that often had speakers such as nutritionists, journaling experts, and other mainstream and alternative medical practitioners. As a result, she used many kinds of alternative therapist to help her deal with her treatment symptoms.

Holz gained the greatest benefit from a survivor-led group. "I liked knowing that she had been through it all - and she looked ok."

Some support groups are even led by compassionate people without professional or personal experience with cancer. Support groups also vary by size and by how often they meet. Some groups are drop-in only while others require a commitment of six weeks or more.

The latest development is the Internet support group, which makes it easier for women living in isolated areas or those with hectic work and family schedules to participate regularly. Researchers have found that these groups hold great benefits for participants. These groups also add a level of anonymity for the unsure. Some psychologists have found that people are more likely to seek online support for diseases seen as stigmatizing, such as breast cancer, than for other disorders, such as heart disease.

Perhaps the key to gaining the emotional benefits of a support group is finding the right one. "I found that it helps to talk to the support group leader before you go to find out the goals of the group," says Nikki. Holz recommends asking also about the mix of people involved, the location, timing, and commitment of the group. Both agree that women should try a group two or three times before giving up. "The first time can be scary for all the women; there's no way to know how the group will gel until it has met at least twice."

And support groups, especially drop-in ones are always there. "You can go when you need it and stop when you're ready," says Nikki. "What a wonderful thing to have in your pocket for whenever you want or need it."

*These names have been changed to preserve anonymity.