A Forgotten Population?

Article by Musa Mayer

This excerpt is reprinted with permission from "Advanced Breast Cancer: A Guide to Living with Metastatic Disease," by Musa Mayer, copyright 1998, published by Patient-Centered Guides, Sebastopol, CA. For more information, please call 1-800-998-9938 or visit www.patientcenters.com/breastcancer

Not long ago I visited a boutique that sells prostheses, lingerie and bathing suits to meet the special needs of breast cancer patients with mastectomies. Because I had purchased from them before, I knew the two women who ran the store, and they remembered Examining Myself, the memoir I'd written about my own experience with primary breast cancer.

"What are you working on now?" one of the women asked politely. When I told them that my new book would deal with metastatic breast cancer, she grimaced and exclaimed, "Now, that's a depressing subject!" The other woman, who had been listening, turned her back toward me. Both these women have had mastectomies themselves, and make it their business to help hundreds of breast cancer patients look and feel their best.

Such reactions no longer surprise me.

Eight years ago, I sat with a group of newly diagnosed breast cancer patients in a hospital conference room, feeling enormous relief to be telling my story to women who understood and shared what I felt When the group ended some months later, the nine of us decided to continue gathering in a private home, without a leader. We were close and wanted to stay in touch.

Within a year, two of our members, Pat and Miriam, discovered their cancer had recurred. Pat was diagnosed with metastases in the bones of her pelvis; Miriam's first metastases were to the internal mammary lymph nodes behind her sternum. Both joined what was then an experimental trial of the drug taxol. Miriam, whose response to the taxol was not very favorable, received other conventional chemotherapy. Pat, who had responded well to the taxol, elected to undergo high dose chemotherapy with stem cell rescue.

In our group meetings, we found that Pat and Miriam's new status as metastatic breast cancer patients had an inhibiting effect both on them, and on the group as a whole. A perceptive group therapist might have remedied this, but we were a self-led group and it was hard to speak frankly about something we all feared so much. Pat and Miriam discussed the details of their treatments with the group, but perhaps not as freely as they did with one another. But they seemed reluctant to speak to the larger issues of their changed perspective, of the gulf which now apparently separated them from us, or of their fears of the treatments they faced, of becoming disabled or dependent, of death and dying. By the same token, the rest of the group was inhibited in expressing concerns which might seem trivial by comparison. Even when Pat and Miriam weren't there, we didn't really discuss our fears for them, or for ourselves. It was too large and upsetting a topic for us to tackle unaided.

Some support groups break up under the strain. We stayed together. Nearly five years after Miriam's death and three years after Pat died, another member of our group, Penny, is struggling with metastatic disease. And we are still afraid. It is still hard for us to talk about it. We are still scared into silence, sometimes.

Fears and stigma surrounding advanced breast cancer

Breast cancer isn't the shameful secret it once was, but its real face is still partially hidden. While the disease is widely covered in the media, the message, these days, is almost always cheerful, emphasizing early detection of localized primary disease and the high likelihood of cure. But the reality of metastatic breast cancer is almost never publicly talked about, and considered too downbeat by mass media to attract an audience.

From watching TV and reading the newspapers, you'd think breast cancer was rarely a fatal disease any more. Throngs of happy survivors sporting pink visors participate in runs and walks around the country each October to benefit various support and research organizations. Not a month goes by without the news of some heartening medical breakthrough in treatment or diagnosis that on examination usually turns out to be far less promising or novel than it is touted to be.

Clearly, it is reassuring to women terrified of breast cancer to know that so many do recover. The hope is that this new optimism encourages women to be less afraid to examine their breasts, and to seek screening for early detection, when the treatment is most likely to be curative. And newly diagnosed women clearly take great comfort in the longevity and vigor of long term survivors.

The nasty secret that inspired shame and silence thirty years ago, before pioneers like Betty Ford and Happy Rockefeller brought breast cancer out of the closet, hasn't changed one bit: women are still dying of this disease, and in huge numbers. Breast cancer remains the most common cancer in women, and the leading cause of death for women between the ages of 40 and 55. This year alone, 43,900 American women will die of it.

"Women whose breast cancer recurs are a forgotten population, shunted aside because they have blown it. They have failed," said a social worker at a leading cancer center, as she spoke about the group she led, for women with advanced breast cancer. "The people we see in the media are the winners in the cancer wars. They're the people we applaud, whom we put on television to talk about breast cancer. Women with metastatic breast cancer connote a failure of medical knowledge and science, which, clearly, the system doesn't feel good about. The view is that once you have metastatic disease, it's a death sentence, and that it's really over."

But fear masks more than dire realities--it also suppresses the surprising news that fully 20 percent of newly diagnosed metastatic breast cancer patients go on to live five years or more. "Prevailing public perception," according to the National Alliance of Breast Cancer Organizations, has it "that advanced or metastatic breast cancer is an immediate death sentence--often perpetuated through the inaccurate media portrayals." A 1995 survey NABCO sponsored overwhelmingly refutes this image, with 74 percent of 200 respondents dealing with metastatic disease reporting that they are, in fact, "not limited in normal daily routine." Not only do women die of metastatic breast cancer, but they also live with it, often for many years.

It's hard to hear, but important to listen, not to just the rosy tales we hear on TV, but to the real life stories of women and men living with metastatic disease, near the edge of life, where one day all of us must go.

In the real lives of women with metastatic breast cancer, along with precious moments of peace and transcendence, there is also pain and anger and a terrible sadness. In real lives, terror and self-doubt keep daily company with courage. In real lives, family support is given by human beings, not saints, by husbands who are tired and frightened too, by children who withdraw into themselves, whose schoolwork suffers. In real lives, despite the love and support, there is still, at times, a wrenching loneliness, and the fear of becoming dependent and burdensome on those you love.

In real lives, the boredom and dehumanization of hours and days spent in hospitals and laboratories and doctors offices swallows time and energies. In real lives, waiting becomes the constant, a training in patience and perseverance that comes in just two flavors: tedium and anxiety. Even with the best, most compassionate (not to mention affordable and available) medical care, there are bound to be times a woman with metastatic disease feels out of control, at the mercy of tests and divergent medical opinions, times when she despises the weariness and sickness of constant treatment, and is overcome with the fear of what lies ahead, as she struggles to keep some measure of hope, and live with her disease as best she can. In real lives, lived with metastatic breast cancer, all these feelings are commonplace, yet rarely shared with others.

The Anatomy of Courage

Yet, despite all these difficult realities, the metastatic and high-risk breast cancer patients I interviewed for Advanced Breast Cancer, and their spouses and partners, have been able to summon the strength to turn toward what is most frightening, rather than to turn away, as our culture of denial encourages us to do. They have chosen to embrace the "full catastrophe," as Zorba the Greek termed it.

In doing so, they have sought out new sources of meaning and joy, as their lives unfolded moment by precious moment. They celebrated and they mourned. They let go of illusions and revised their expectations. They held tight to those they loved, forging real intimacy through honest expression, and they reached out to help others. They weathered the physical and emotional distress of treatments and disease progression with compassion for themselves, expressing emotion yet not drowning in suffering. They informed themselves and sought out the best of care, at times raging at the unfairness of the system and fighting for their right to treatment and relief from symptoms. They made conscious choices and plans. They sought transcendence and beauty in creativity--through poetry, music, artand often through the writing they did for this book.. They sought a communion with the natural world, sensing their own place in the flow of the seasons and in all of life. Seeking acceptance, they passionately pursued a connection with God or whatever spiritual force they understood for themselves. From all these sources, and many more, they kept on keeping on--reinventing the strength day by day to live fully for the time that remains to them.

They are ordinary women and men just like yourself, possessed of no special heroic capacity before illness came into their lives. Put simply: they rose to the occasion. They did not accomplish this alone, without help. They learned, often from other patients, to assert and inform themselves. They depended upon the love and support of their families and friends. They relied on the skill and compassion of their doctors and other care providers. With the help of their spiritual communities, they sought comfort and meaning. By telling their stories, and sharing their insights, it is their hope and my own that your own journey will have been made less lonely and frightening.

Whether you are dealing with primary breast cancer or with metastatic breast cancer, you know what it is to feel isolated and to live in fear of what may lie ahead. We all do. Being aware of the larger social pressures promoting denial may just help you to identify what's going on. If your friends or family members ask how you are, but don't seem to want to know the answer, if they change the subject or say, "But you're fine now, aren't you?" rather than listening to you, you can know that it is their fear of their own mortality talking. It doesn't excuse such behavior, but it makes it easier not to take it personally.

What can you do about it? Speak frankly and seek out others who understand your feelings. Telling your story and hearing the stories of others, whether in a support group or in the pages of a book, can provide surprising help and real comfort--but it's not an easy thing to do. Speaking publicly, or even privately, about any illness where the word "cure" is rarely spoken, where length of survival is extraordinarily variable, where medicine too frequently defaults on its promise of life-saving treatments, means confronting others with what they'd rather not think about. It means being mindful of walking the thin edge between preserving hope and facing reality, between optimism and truth-telling, between challenge and acceptance. This balancing act is what all metastatic breast cancer patients, and their families, caregivers and physicians face every day.

It takes courage to tell these stories, and it takes courage to listen to or read them. The women and men I interviewed for Advanced Breast Cancer felt they had something to offer to all of us dealing with breast cancer, wherever we are with our disease. "That's what we're here for," one woman told me, "to tell you we are on the same journey as you are and have just made it down the road a bit further. We are like scouts, trotting our horses back to tell you what's on the other side of the mountain."

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