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.

She seemed invincible.

Thirty-eight-year-old Cindy Gensler had buckets of wavy red hair and less body fat than a bagel. She could bench press 200 pounds and dead-lift four and a quarter, and had just taken second place at the National Power-lifting Championships.

The “fat little kid” was on her way to becoming a fitness folk hero. She was waiting for the people at “American Gladiators” to call and tell her that yes, she was going to be on the show.

Instead, the Santa Monica resident got an urgent call from the mammographer she’d gone to three weeks earlier--the one who had told her that as long as nobody contacted her, she could assume she was fine. There was something suspicious on Gensler’s mammogram. Could she come in to see the specialist? Immediately?

*

Two years later, the memory still causes tears to well up in her green eyes. The punishing medical treatments--three surgeries, disabling chemotherapy and six weeks of daily radiation treatments--are over. Her glorious red hair, her trademark, her vanity, has grown back, and her physical strength has returned. But her heart still hurts. The emotional pain lingers.

Since 1989, a growing advocacy movement has made us all too familiar with these numbers: About 186,000 women will be found to have breast cancer in 1995--one every three minutes--and 46,000 women will die of the disease.

The risk increases, while a breakthrough in terms of prevention or cure remains frustratingly out of reach. The growth industry is on the psyche’s side of the mind/body equation, where the breast cancer patient faces a veritable cornucopia of psychosocial opportunities. The problem is, nobody’s monitoring quality, and nobody knows the proper dose. But with abundance comes a troubling imperative: You have to try everything or you won’t stay well.

Psychologist Ann Coscarelli, director of the Rhonda Fleming Resource Center for Women With Cancer at UCLA, says the “blame the victim” mentality can make a woman a professional patient, too frightened to pass up any available treatment.

The trick is to know how much to take on and when to walk away. Coscarelli says it’s crucial “not to feel compelled to try everything that comes along.”

Sally Berg, a pioneer in psychosocial support, agrees. After 13 years of organizing and participating in groups, she has walked away from it all. “There is such a thing,” she says, with a sigh of relief, “as too much cancer.”

*

At first Cindy Gensler had a wisecrack for every occasion: When her mother insisted on reading movie reviews to her as she recuperated from her lumpectomy, Gensler complained, “Mom, I have cancer. I’m not blind.”

She decided to lie her way through her treatment rather than admit anything was wrong: She told people that she had cropped her hair because she wanted a new look and said her bandages were from shoulder surgery. She raised a wry eyebrow at “the Red Death,” the nickname for Adriamycin, one of her chemotherapy drugs, and staunchly announced her intention to keep up her training schedule.

Two months into her treatment, Gensler’s brash sense of humor deserted her. Having developed every one of Adriamycin’s side effects, she understood too well how the drug got its nickname. Lying was no longer an option: She couldn’t get out of a chair by herself, let alone go to the gym.

“I was really humiliated,” Gensler says. “Everything that I identified with myself was gone, and I fell heir to all the things that everyone thinks: ‘I allowed this to happen to me.’ ”

So Gensler began her journey toward emotional healing--one that turned out to be as daunting, in its way, as her medical treatment. She began with the one person she has continued to see, a private therapist who understood the value of a little heartfelt sympathy.

“I called her and said, ‘Hi, my name is Cindy and I have cancer,’ and she said, ‘Oh, that’s so terrible. It’s so awful. I’m so sorry.’ It was the first time I had ever heard those words,’ Gensler recalls. “Nobody had said, ‘I’m so sorry.’ . . . She just let me be miserable, which is exactly what I needed.”

If some help was good, surely more would be better. When Gensler’s oncologist told her about a behavioral oncologist whose nurse worked with cancer patients, she immediately made an appointment. Desperate to make sense of what had happened to her, Gensler made the hour’s drive to Malibu once a week, a plastic bucket wedged next to the driver’s seat so that she could throw up without damaging the leather upholstery. She paid $150 an hour for a mandatory two-hour session--one hour with the nurse, one hour just lying on a couch watching videotapes.

For the first time, she had the uncomfortable sense that she was not getting her money’s worth. “It’s hard to know who’s sincere and who’s not,” she says. Gensler began to feel that she was being exploited by people who saw her primarily as a profit center.

“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.

She became a convert immediately. For the first time since her diagnosis, Gensler felt not only safe, but among people who understood her. She attended the Thursday evening group religiously for months, eager for the chance to swap horror stories and sip a plastic glass of champagne at the slightest provocation. (“We celebrated everything,” she says gleefully.) The other members of the group became her buffer against the outside world. They shared jokes (“the black humor cancer stuff that you can’t tell anybody else”) and let off steam.

The group succeeded where others had failed. Finally, Gensler began to feel all right--or rather, to understand that she wasn’t crazy to be feeling all the things she was feeling. She was as close to peace as a woman with an unpredictable disease might get.

And then, last summer, one of the women announced that she was ready to move on.

“We were all kind of shocked,” Gensler says. “She didn’t want to leave because she didn’t want to be with us, but she didn’t want the group to be the defining aspect of her week.” Soon a second woman announced that she was thinking of leaving.

Gensler allowed herself to take a peek at freedom. “The door was open now, the path was visible,” she says. “This was an hour-and-a-half of intense cancer conversation every week. I didn’t need it to be that level of intensity. . . . I didn’t want to sever my ties, but I didn’t want to stay with it so close.”

The only question was, where would she go next?

*

Fran Visco, the feisty head of the National Breast Cancer Coalition and co-chair of the Women’s Health Initiative, never did any support work. Her illness was diagnosed in 1989, but, she says, “I’m just not a support group kind of person.”

Then she laughs. “Yes I am. Political activism is my support group.”

There is a backlash among breast cancer patients who are wary of being consumed by personal issues--women who prefer to reside in what NABCO’s Langer calls the “constructive support mode”--using their experience to help others.

“It’s not classic therapy,” Langer explains. “It’s an action mode. The idea is that through doing something positive you’ve turned the disease into something actionable.”

Some support networks have initiated reality checks--points in the process where cancer patients are expected to take stock and ask themselves if they really need to continue.

Joanna Bull began her career at the Wellness Community, where group members are asked to end their participation 18 months after they decide they are asymptomatic. At Gilda’s Club she’s going to draw the line more quickly: “We’re going to ask people to evaluate at six months post-treatment whether they’re getting something out of the work.”

Ronnie Kaye, a private therapist and breast cancer survivor who holds time-limited groups, says simply that any breast cancer patient who still attends a group five years after her cancer’s diagnosis “is not doing the work. She may be going for some other reasons, but she’s not doing the work.

“It’s possible,” Kaye says, “to be over-supported and underdeveloped.”

Gensler agrees. Her new goal is not to gaze inward, but to act outward, as a volunteer in the American Cancer Society’s Reach for Recovery program. She also participated in a recent four-day conference called Project Lead, conducted by the NBCC to train activists.

“I’ve got to do something,” Gensler says now. “All those people who did something for me, maybe I can’t pay them back specifically, but I can help somebody else.”