Cancer: When the Diagnosis Is Cancer (cont.)

Helgeson is continuing to follow the women who participated in her study to determine if they might have a different view of their experience over time. She says, "If you take someone who doesn't want to talk about her cancer and have her come to a support group so she can talk about it, it's definitely going to increase her distress in the short-term. But the question is, will it eventually have therapeutic value? I don't think the evidence is clear on that issue."

New York psychologist Sandra Haber, PhD, who counsels people with cancer and urges most of her patients to join a support group, agrees that long-term responses might be different. She cites the example of the woman who was told by the group that her mother-in-law wasn't being as kind as she thought.

"When you're making a person look at things differently, it's rough in the short run, but sometimes that results in healthy behavior in the long run," Haber says. "It's certainly worthy of more study."

Diversity and Equality Not Always Good

The group that Forman attended was a hospital-based program that, like many groups across the country, included women with all stages of breast cancer. In Forman's group, some were newly diagnosed and had not yet started treatment, while some were battling recurrences. And that may have been part of the problem.

The highly regarded New York City peer support group Self Help for Women with Breast or Ovarian Cancer (SHARE) makes an effort to avoid that kind of mix. SHARE spokeswoman Cydney Halpin says, "We would never put a newly diagnosed woman in with a group of women with advanced disease." SHARE leaders also match women according to age, marital status, and religion.

SHARE groups are led by breast cancer survivors who have been trained as facilitators, which Forman believes may have also made a difference to how she felt about her own support group. Not having a person in charge to keep the discussion on track contributed a lot to her dissatisfaction, she says.

SHARE's philosophy is that it's more important that the facilitator be a breast cancer survivor than to have a professional degree, but not everyone agrees. Helgeson believes it's less helpful to put a nonprofessional in charge because of her lack of training. Haber takes the middle road: She strongly recommends that a professional be in charge, but she refers women with cancer to SHARE and says the training program is quite good. Nevertheless, she says, the more diverse the group, the stronger and more experienced the leader must be to make the sessions productive.

Clearly there are no hard-and-fast rules, and at the moment the evidence promoting any particular support group model is not in. Haber's advice for women newly diagnosed with breast cancer is to try one or two groups and see how they like it. "There is rarely a downside to trying something," she says. It's also helpful to find a group of people with whom you have something in common besides the illness.

As a result of her negative experiences, Forman says she now knows what she's looking for in a group. "I might join a group that is geared more toward spiritual, psychological, and physical wellness, rather than a group that was stuck focusing on the problem of cancer."

Dianne Partie Lange is the co-author of Informed Decisions: The American Cancer Society's Guide to Cancer Detection, Treatment, and Recovery and the ACS's Cancer And Women. She is also a contributing editor to Allure magazine.

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