Facing Breast Cancer, I Did What Conventional Wisdom Dictated:
I Joined a Support Group Expecting a Lot of Healing, Sharing, and Even to Extend My Life. What I Found Was Something a Little More Real.
By Peggy Orenstein
NO ONE LOOKED too sick. That was my first thought. True, about half the women in the room were bald and frail from chemotherapy, but in some cases the effect was surprisingly fetching, a fashionable first cousin to heroin chic. This was my first foray into the Breast Cancer Support Group For Women Under Forty. I’d come because as a thirty-five year old cancer patient, I felt like a freak: getting cancer was like being forcibly repatriated to a country in which nothing I previously cared about, nothing beyond illness and its treatment, mattered. More importantly, I’d heard vaguely that group support could increase survival—something about learning to express emotions. Joining up was one of the things the take-charge patient did, along with finding a reputable acupuncturist, enrolling in yoga, and buying organic carrot juice (which I despised but now drank daily). It didn’t occur to me not to do it.
That first night, I told my story and listened while everyone else told hers. The intimacy, a kind of foxhole sisterhood, was electric, although many of us had little beyond our illness in common. Two were devout Christians who believed in the healing power of prayer. Several others, including me, were skeptical Jews. One was a corporate lawyer. One was in the Naval Reserve. A few were stay-at-home moms. Three of us were childless. Two were single. We were, however, all white and college-educated, a reflection both of who is most likely to get breast cancer and who’s most comfortable seeking group support. We were also all still relatively close to our initial diagnoses and, to a woman, our cases seemed hopeful.
Over the following weeks, we traded notes on the most responsive oncologists and the best times to schedule radiation to avoid long waits. We talked about the strain cancer put on our marriages, our sex lives. And we talked about the possibility of living lives that might be shorter than we’d imagined. One night Sue, who had the most empathic smile I’ve ever seen, told us her surgeon thought her cancer had come back Her mother and grandmother had died of the disease, and although it turned out to be a false alarm, she was still shaky. “It’s good to be able to come here and talk,” she said. “My friends want to tell me I’ll be fine. They don’t get it. I don’t want to die, but I have to consider the possibility.”
Another time, I mentioned that I’d never seen a reconstructed breast. So many women pulled up their tops, it looked like cancer day at Mardi Gras. Someone flung her prosthesis across the room. Natalie even let me touch her saline implant, the only time I’ve felt up an adult woman.
That was six years ago, and my group has been together in some form ever since. Yet, as the years have gone on I’ve often wondered about the supposed benefits of group support. How exactly does it make you live longer? Are support groups like medicine, with a precise amount one should take? And as the courses of our diseases diverged—as the health crisis has receded for some and deepened for others—I’ve wondered what “support” over the long haul really means, whom it ought to come from, and at what point this form of “treatment” ought to end.
FOR A WHILE, the support group was the only place where I didn’t feel like I had a big red c stamped on my head. Even now, when I tell new acquaintances that I had the disease, they look stricken, as if I might wither on the spot, then ask, “Did you have a family history?” I suppose it’s a natural question, though fewer than a third of breast cancers are hereditary (and, for the record, only two in my group appear to be among them), but it’s also a way for people, under the guise of caring, to reassure themselves that they won’t get it. I’m slim, eat right and exercise, so no comfort there. I hadn’t yet had children when I was diagnosed, but that wasn’t so unusual for a 35-year-old. The truly bold (or paranoid) will ask about my mental health: Had I been depressed before my diagnosis? Did I think I had a “cancer personality?”
The fact that I answer such questions politely is probably the best indication that I do have a few teeny, tiny issues with expressing anger. Although I’ve chosen a profession that strives to uncover some notion of truth, in my personal life I strenuously avoid confrontation. And yes, I’ve secretly worried that my emotional dishonesty fueled my tumor—that group therapy geared toward unearthing buried emotions could extend my life only amplified those fears. Wouldn’t that imply the disease was my fault?
“That’s a concern,” admitted David Spiegel, a psychiatry professor at Stanford. “It’s the bane of my existence that my name is one consonant away from Bernie Siegel’s, who says you ‘needed’ your cancer and all that crap.” Spiegel—with the p—was the lead investigator on a landmark 1989 study which found that women with metastatic breast cancer (cancer that has spread to the organs or bones) who attended a weekly “supportive-expressive therapy” group lived an average of 18 months longer than those in a control group. The study garnered massive media attention and almost single-handedly launched the support group movement that is now ubiquitous for those suffering a whole range of maladies. I didn’t know it at the time, but it was Spiegel’s work—or more accurately, the mythology that has grown out of it—that inspired me to seek out support.
The catch is, the findings don’t actually apply to women like me, whose cancer was early-stage and confined to the breast. What’s more, depending on whom you ask, Spiegel’s results haven’t been replicated even for metastatic patients. He points to four of subsequent studies that had similar outcomes, though they didn’t look specifically at breast cancer. Four that did showed no impact on survival, including the largest and most recent breast cancer study, designed in consultation with Spiegel, and published in 2001 in The New England Journal of Medicine. Which isn’t to say that the groups conferred no benefits. Participants reported less pain than others, and those who were anxious or dejected felt better—itself a worthy outcome. (Among those who weren’t distressed, the groups didn’t help at all.)
According to study author Pamela Goodwin, those conclusions allow women to opt out of groups without feeling guilty. “That was the worst fall-out of the attention paid to Spiegel’s original results,” she said, “There was someone in our study who, when she saw me just before she died, apologized, saying she must not have done the support group properly.”
But the idea that emotions are not linked to survival could be a hard sell. The flip side of believing that anger, depression or other “bad” feeling caused your cancer or contributed to it is believing you have the power to cure it. People want to believe that. In a 2001 Canadian study of two hundred ovarian cancer survivors, almost two thirds believed that stress had caused the disease. More than 80 percent attributed their survival to a positive attitude, and nearly as many to prayer. A related study of 400 women who had breast cancer produced similar results—fewer than 5 percent chalked up their survival to the medicine often used to prevent recurrences, tamoxifen.
“The mind-body connection has been oversold and overbought by a culture that wants to believe that if you will something it will be true,” said Jimmie Holland, Chair of the department of psychiatry and behavioral sciences at the Memorial Sloane-Kettering Cancer Center in New York. “But it’s one of those things: If you believe in it, no evidence will change that, and if you don’t, you’ll always be a skeptic.”
Meanwhile, Spiegel, whose own long-term study on therapy groups is still in the works, isn’t willing to concede the survival question just yet. He speculates that the “dose” of Goodwin’s groups was off—they should have lasted longer. Or perhaps his original outcome was an artifact of another era. A lot has changed since Betty Rollin’s 1976 groundbreaking book, the First You Cry, when cancer was the Voldemort of diseases, its name never spoken out loud. Now you can’t buy a container of yogurt without being reminded of it. “It’s harder to be as isolated now than it was in the ’70s,” Spiegel said. “There’s more social support in general. Chemotherapy and hormonal therapies are better too; people live longer. You can’t improve survival twice.”
Spiegel’s original groups were therapist-led, met weekly and accepted new members only when someone died or moved away. They were somewhat structured, focusing on seven tasks that ranged from improving communication styles to learning self-hypnosis to manage pain. My initial group was also facilitated by a therapist, but had no set agenda. New members joined regularly, and when they did, we’d have to backtrack, repeating the diagnosis stories from which we desperately wanted distance.
I also noticed that after a couple of months, I began leaving meetings feeling anxious. “Are you sure you want to keep doing this?” my husband asked one night. “You’re more depressed when you get home than before you leave.” He was right. I’d had my surgery, finished my radiation. Although I’d always be vulnerable to getting cancer again, I wanted, as much as possible, to emigrate back to the land of the healthy. I attended the group sporadically for a while longer, mostly because I genuinely liked of the women in it, but eventually, without saying goodbye, I drifted away.
A YEAR LATER, Natalie called. She was organizing a pot luck reunion at her house. Would I like to come? I don’t remember much about that night, but by its conclusion, almost unintentionally, we reformed. Without a leader, we weren’t precisely a therapy group anymore, nor were we quite friends—I haven’t been to most of my fellow members’ homes, couldn’t tell you all of their last names. But our intimacy remained intense.
Yet oddly, as we grew closer, we also grew more careful with each other. Although we talked about cancer in a general way—decoding the latest research, debating genetic testing or the value of tamoxifen—we stopped asking direct personal questions. Two out of 10 of us had recurrences to the breast, but I didn’t really know what that meant. Sharon had bone metastasis, but I was unsure about her status. Maybe I no longer felt I had the right to inquire, or perhaps I didn’t want to know. Yet, I didn’t consider abandoning the group any more than I would have expected others to leave if I’d been the one to relapse. It felt wrong, especially once Robin was dying.
Robin’s cancer had spread to her lungs and was growing rapidly. Her ex-husband, meanwhile, had died of a heart attack, leaving her as the sole parent of two young boys. She talked frequently about to whom, among her siblings, she might entrust the children. She talked about her treatment and the toll it was taking on her. But the subject of her imminent death came up only once, at a surprise forty-first birthday party we threw for her, which one we suspected would be her last. She blew out the candles on her cake and announced that her wish was to have sex one last time. “I’m thinking of taking out a personal ad,” she joked. “It would say, SINGLE WHITE FEMALE LOOKING FOR GOOD TIME. NO LONG-TERM COMMITMENT REQUIRED.” We all laughed—Robin was a big presence, fiercely funny and resistant to pity—but then she grew serious. “I have to be able to talk about dying. When I try to talk to my friends, they tell me, ‘Oh, Robin, if anyone can beat this, you can.’ It’s not a matter of beating it anymore.” We all fell quiet, but then Meredith’s new baby cried, and Robin went to soothe him. The moment passed, the conversation changed, and we never found our way back. Later I realized how Robins’ comments echoed Sue’s several years before. In those days, we could listen to one another talk about death without flinching. We were, after all, in it together. But now, even in this group, Robin was on her own.
Robin died on September 9, 2001. Her funeral was two days later. All morning I watched the Twin Towers collapsing on TV. Then I drove along the empty freeway, the jetless sky above me, to the service. About half of our group attended. Along with hundreds of those who’d loved and respected her, we listened to the James Taylor songs she’d chosen, heard the eulogies of old friends and family, and cried. We promised to get together soon. But here’s the thing: we didn’t. We stopped meeting entirely. In the weeks and months that followed, as no one, including me, called the group together, I began to think it was for the best. I’d joined during a crisis. I’d stayed, in part, to see someone else through hers. And now? How much did I want cancer to define me? What, exactly, was my commitment to my fellow survivors? What did I want theirs to be to me?
A year later I still felt unsettled. I mentioned my quandary to David Spiegel. “I think that’s where a good leader would come in,” he said. “There’s a point where people who’ve had primary cancer don’t want to identify themselves as a cancer patient. But if I were running your group, I’d say, ‘That may be true, but grieve the loss of Robin first. Then if you decide it’s time to stop, fine.'” I realized he was right. I couldn’t leave it like this. In the end, I was the one who gathered us together, with this article as my pretext.
As always, seeing these women filled my heart with gratitude. Esther’s hair, which had fallen out during a new round of treatment, was now long and lush. Sue had just given birth to a second daughter; four months pregnant myself with my first, I was eager to talk to her about pregnancy after cancer. Sharon, who was in remission, passed around pictures from her daughter’s bat mitzvah. There was sad news, too: One member, who had moved out of the area, had discovered her cancer had returned. She’d been clean for seven years.
As we caught up, I asked why we hadn’t met since Robin’s death. “It’s true,” Natalie said, “we didn’t naturally draw back together. If I’d said, ‘Okay, we’re all coming back to my house—'”
“And why didn’t I do it?” Sharon cut in. “I think I just withdrew.”
I’m no therapist, but that night, as a reporter, I felt a little like I had in the group’s early days, when we were strangers and the rules of polite friendship didn’t apply. We did we now avoid difficult topics? I pressed. “I didn’t even tell the group about my metastasis for a long time,” Sharon admitted, “because….” She paused, searching for words. What did it mean that she couldn’t tell her cancer support group that she had cancer? “It felt like a betrayal,” she finally said. “Here you were all moving on. I felt….different.”
“For me,” added Laurie, whose cancer returned in her chest wall two years after her initial diagnosis, “I didn’t want to talk about it much. Maybe it was a form of denial.”
At that moment, Natalie’s kitchen phone rang. Usually her canary mimicked the sound, but this time it was silent. “Hey, what happened to the bird?” someone asked.
Natalie rolled her eyes. “It died of a brain tumor.” We laughed so hard her husband shut the door to block out the noise. We all found out new things about one another other that night, particularly about Sharon. I hadn’t known that she had stopped working when the metastasis was discovered or that her disability payments had been in jeopardy. I didn’t know that she was dogged by fatigue, or how she felt about the chance that the cancer would kill her. “I do think of myself as somebody who has metastatic breast cancer,” she said. “I appreciate that I’m in this great period of being able to be blissfully ignorant of it. But I know what a remission is. It delights me to go for days without thinking about cancer. But it also makes me feel secure to know that when I do dip into it, it doesn’t totally throw me.”
I asked Sharon how she thought the group could improve. Her answer was immediate: “If we went back to meeting more often,” she said. I felt a stab of apprehension. Earlier that evening, I’d confessed that I’d felt relieved to give up the group after Robin died, ready, possibly, to let go, or just attend the occasional reunion. Yet tonight, I’d also realized that this group held a part of me that no one else could reach. I honestly wasn’t sure where to go from here. So I said what was true, but not the whole truth “Seeing everyone again makes me so happy.”
Laurie nodded, “It’s like a miracle,” she said, and I saw tears spring to Natalie’s eyes.
“You know,” Esther added, “we’ve seen each other reach milestones that at one time we thought we might never see.”
“And we’ve always had fun,” Natalie said.
We were quiet. “I say, we all pitch in and buy Natalie a new bird,” I said, and the mood broke. A good therapist might not have let me get away with ending on a joke, but as in life, a good therapist is not always around. It’s just us, muddling through.
© Peggy Orenstein. All rights reserved.
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