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The Road to Wellville? : Support groups can be a welcome refuge for breast cancer patients. But at some point, it's probably time to move on.

August 22, 1995|KAREN STABINER | SPECIAL TO THE TIMES

"She never helped me," says Gensler, still angry. "She was the profiteering part of it. She just listened to me complain and then said, 'You need some support.' But she never offered me tools how to find it. I don't know how to ask for help."

Why do breast cancer patients work so hard on their souls? A combination of physical, emotional and cultural factors makes the breast cancer patient a prime consumer for support services. Coscarelli says that it is hard for women to accept that they are casualties of biological bad luck. Since no one has a definitive answer for what causes breast cancer, women turn to themselves--and sometimes, on themselves--for an explanation.

"It's human nature to try to find a reason for something that happened to you that's bad," says Amy Langer, director of the National Assn. of Breast Cancer Organizations and a breast cancer survivor. "We don't know what causes breast cancer, so we're left without closure for ourselves. Lacking the scientific information we need to explain most cases, it sets up what I consider a fairly unhealthy approach: 'It's my fault.' "

Breast cancer also robs a woman of physical control during her course of treatment, and forces her to confront issues of sexuality. Losing a breast, in a culture that idolizes the female form, can be a devastating experience.

"Women can invest, quite rightly, a lot of emotionality in their breasts," says Joanna Bull, co-founder and director of Gilda's Club, the support community--named for the late Gilda Radner--that just opened in New York City. "They've got something that has both external shape and tremendous internal symbolism for them."

Add to that what Coscarelli calls "peer pressure from the support network," and women feel they have to look for help.

Harold Benjamin is the founder of the Wellness Community in Santa Monica, which for 13 years has been promoting the notion of "combining the skill of the physician with the will of the patient." Two-thirds of the people who attend Wellness Community Groups and workshops are women--and of those, fully half are breast cancer patients.

The problem is that there is very little data on the efficacy of support work--and the one study that everyone cites so surprised the man who designed it that he is now duplicating it to see if he can get the same results twice.

Stanford University psychiatrist Dr. David Spiegel divided women with advanced metastatic breast cancer into two groups: Half participated in a support group run by a trained group therapist and half did not. Spiegel expected to disprove the mind-body connection. Instead, he found that the women in the support group lived twice as long, on average, as the women who didn't attend--36 months instead of 18.

"I think almost anyone can benefit from some kind of group intervention," Coscarelli says.

But those who offer such services are careful to define exactly what they can and cannot provide.

Benjamin is passionately devoted to the notion of a healing community, but he is cautious when he describes its potential benefits: "There are studies which indicate that being with other people who understand enhances the quality of life," he says. "If you enhance the quality of life . . . you will improve the strength of your immune system. If you improve the strength of your immune system, you may alter the course of the illness, toward health. You may."

Or you may not. "You know that you may die," Benjamin says. "Sometimes biology overcomes psychology. Quite often. Wouldn't it be crazy for us to say that if you come to us, you will get better?"

It is a matter of buyer beware. The support network, like any therapy, depends for its economic health on people continuing to work on themselves, rather than moving on. Programs that charge for their services have a vested interest in making sure that women keep buying what they're selling. Programs that offer free help still have to raise funds by convincing investors that they're popular, which translates into having a large patient population.

Langer recommends two criteria for choosing a support group: Find one that's professionally led and segregated by common experience. "I remember going to a breast cancer support group once," she says. "I was a 30-year-old among 60-year-olds talking about lymphedema, and I was sitting there wondering how I'd explain this to a date. I ran away as fast as I could. It wasn't sufficiently customized. It wasn't relevant to me."

*

After seven months on the self-help circuit, Gensler was fed up with what she called "non-clinical, people-who've-been-through-it advice." She'd heard about UCLA's support groups when her condition was diagnosed, but dismissed the idea because she figured her "usual bluff and bluster" would get her through. Now she understood that it wouldn't--and so, though she was very scared about discussing her situation with strangers, she decided to give it a try.

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