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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 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?

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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."

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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.

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