Advanced Breast Cancer A Guide to Living with Metastatic Disease, 2nd Edition By Musa Mayer 2nd Edition September 1998 1-56592-522-X, Order Number: 522X 540 pages, $24.95

Preface
With Arms Held Out

A difficult subject

Not long ago, I visited a New York City 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 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 what this book was to be about, 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.

That small moment was only one example of a reality I'd been aware of for years: Breast cancer strikes such terror into the hearts of American women that if they look at it at all, it is to turn instinctively toward those who are deemed cured, and focus more on the cosmetic realities of the disease than upon the threat to life itself.

Breast cancer entered my life in April 1989, when I was diagnosed with an infiltrating ductal carcinoma in my right breast, Stage IIA. I chose to have a modified radical mastectomy with simultaneous implantation of a tissue expander, later replaced with an implant. Although the cancer had not spread to my axillary lymph nodes, because of the three centimeter size and moderately aggressive pathology of the tumor, I decided to undergo six months of chemotherapy treatment with Cytoxan, methotrexate and 5-FU, or CMF. My treatment and recovery were considered uneventful, and I have experienced no recurrence of my cancer--but still, what had happened moved me to write and publish my story, focusing in particular on the emotional aspects of recovery. Beginning with the support group I joined during my treatment, and broadening to include the larger breast cancer community, my involvement with other women and men dealing with this disease has been redeeming and life-changing.

The elephant in the room

There's an elephant in the room.
It is large and squatting, so it is hard to get around it.
Yet we squeeze by with "How are you?" and "I'm fine"...
And a thousand other forms of trivial chatter.
                         Terry Kettering

The nine of us newly diagnosed breast cancer patients first met in a conference room at The Rusk Institute in New York City for a weekly group led by a social worker from the Cancer Rehabilitation Service of New York University Medical Center. When the Service lost its funding, we decided to continue gathering in a private home, without a leader. We were a close group and wanted to stay in touch.

Within a year, two of our members, Pat and Miriam, discovered their cancer had returned. 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 at Memorial Sloan-Kettering Cancer Center. 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 this procedure, sometimes called a bone marrow transplant, chemotherapy is administered in such high doses that the person would die if her own stem cells, harvested and frozen beforehand, were not reintroduced to rebuild the immune system.

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. While Pat and Miriam discussed the details of their treatments with the group--though perhaps not as freely as with one another--they seemed reluctant to speak to the larger issues of their changed perspective, of the gulf that 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 that 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 the elephant in the room, too large and upsetting a topic for us to tackle unaided.

Gradually, as Pat and Miriam became more ill, because of their treatments and eventually because of the disease itself, they attended the group less and less. Each of them, we heard, was able to find some support from other women they met during hospitalizations, or in their doctors' offices, or from groups they briefly attended for metastatic cancer patients. Each of them withdrew into their families as time went on. A few of us in the original group kept in contact with Pat and Miriam and reported back to the others on the progress of their treatments and the latest test results.

It was Miriam's death, in December of 1992, as well as the celebration of my fiftieth birthday a month later on the same weekend as her memorial service, that inspired me to renew my efforts to complete the book I'd written about my own treatment and recovery and get it into print.

A year later, Examining Myself: One Woman's Story of Breast Cancer Treatment and Recovery had found a publisher and was released. By then, Pat had successfully taken her insurance company to court to force them to pay for a second high-dose chemotherapy with stem cell transplant, after the first had failed. Several of us in the group had circulated petitions and marched in Washington for the National Breast Cancer Coalition's first drive to lobby the President and Congress for increased breast cancer research funding.

Sharing the experience of metastatic breast cancer

The following summer of 1994, I discovered the Internet and the newly created Breast Cancer Listserv, a remarkable group of hundreds of people all over the world whose lives had been touched by breast cancer: patients, family members and friends, researchers, nurses, doctors. Every day I received all the e-mail messages that other people who subscribed to the List had posted (sent) to the computer in Newfoundland that distributed the e-mail messages around the world.

Most of the participants on the List seemed to be, like me, information seekers whose anxieties were allayed somewhat by finding out the facts. I felt right at home. I knew a lot about breast cancer already, but now, with the benefit of all these diverse experiences and perspectives, I learned how much more there was to learn. What had been personal--specific to me and my support group--I now saw manifested on a much larger scale. What had been abstract became real, in the words of hundreds of women and men describing their lives. Sometimes what I found out was reassuring. More often, though, the imponderables of breast cancer treatment and the diversity of medical opinions seemed only to emphasize how important it was for patients to gain insight into their own minds and hearts as a basis for decision-making.

Except for those who were online to promote their books, and the few radiologists, surgeons, oncologists and researchers who generously gave of their time, it soon became clear that the population of the List was also split between people with primary and metastatic breast cancer. Most prominent were the many newly diagnosed patients, coping with the shock of diagnosis, the confusing onslaught of treatment choices, the effects of surgery, radiation and chemotherapy, and the often lengthy emotional recovery. Gradually, as time passed, these women (and men, for many of the people who posted were the computer-literate and supportive husbands of women with primary breast cancer--and a few were men with breast cancer) came to terms with what had happened and left the List.

When I first joined, those with metastatic breast cancer didn't post many messages about what they were going through to the List at large. There were occasional oblique references to treatment choices, and to the fact that they corresponded privately with one another. Sometimes, when people left the List, we knew they had become very ill and were in the final stages of the disease. From an obituary notice or a husband writing a last message from his wife's e-mail address, we might find out later that a woman had died. But often, no one had an address or phone number, and we were unable to find out what had happened. As we began to acknowledge the real intimacy of our bonds with one another, this became increasingly distressing.

I began to see that there was the same division of interests, the same ambivalence, on the List as in my own support group. Most of the time, women with metastatic disease (and their husbands or partners) were loath to discuss their problems and fears openly, even when invited to do so, for fear of demoralizing the newly diagnosed. Their messages would often be prefaced by disclaimers like, "I don't want to bring everybody down," or "I hope this isn't too depressing." It took a number of reassurances for a new level of dialogue to begin.

Not everyone was pleased about this turn of events. There were those who found that reading about advanced disease was too upsetting, who contemplated leaving, and who did, in fact, leave because of this unwelcome exposure. It was painfully clear that reminders of vulnerability did nothing to help them. There was talk back and forth about how to resolve this problem. No one, it appeared, wanted to split the group in two and lose a single newfound friend. For a while, we tried warning people by placing the code word "METS" (for metastases) in the subject line of the e-mail messages concerning the subject. But that didn't last long.

In the years since this threatening subject has been broached, women and men dealing with metastatic breast cancer have begun to discuss their problems and feelings very freely on the List. Their posts are often moving and eloquent. Those of us fortunate enough not to have had recurrences stand by with compassion, curiosity, admiration and, yes, fear.

Not long afterward, the Breast Cancer List made another evolutionary leap in articulating lives at the edge. A new unspeakable topic was broached, coded in the subject line of the messages as "D&D," for death and dying. Like the short lived "METS" designation of the previous year, this early formality has yielded further disclosures--more of the wrenching, revealing, human chartmaking for this unknown land. Caren Buffum, a teacher from Philadelphia who'd been living with metastatic disease for five years, was among the first to respond:

I just want to add my voice to those who recognize the importance of being able to talk about this, not just at this time, but ongoing. Walking this line between fighting and acceptance is such a balancing act for me--sometimes I need to share how exhausted or discouraged I am--and sometimes I need to be able to hold out my arms to someone else who feels that way. I may want to hide my head in the sand, and sometimes I need to do just that--but I need to be able to take it out again and know that if I get scared, there are others ready with their arms held out.

How this book came to be

It was from this ongoing, free-ranging discussion group that the germ of the idea for this book was born, in part for selfish reasons, to assuage my own sense of helplessness and survivor's guilt in the face of continuing losses. Reading about these lives, I'd felt inspired and strengthened. I could sense how important what these women and men had to say was. I knew that out there, in the larger world beyond the List, were many thousands of women and men who felt isolated with the disease, and that their voices were not represented in the literature. I wanted to offer the moving stories I was privileged to read to those who needed to hear them, beyond the confines reached by an Internet mailing list.

I had also witnessed firsthand how invaluable metastatic breast cancer patients and their families found it to read about what others had experienced. At least some of the pain and fear they felt was eased by this companionship. Both physical and emotional barriers of isolation imposed by advancing disease and difficult treatments were breached when connection with others was only a few keystrokes away. Over and over, I'd seen despair and terror, when expressed and confronted, yield to acceptance and love.

Most of these women and their families believed, at the time they first found out the cancer had come back, that they were on a fast track to the grave. Now they were eager to share the news that many metastatic breast cancer patients can live for years following a recurrence, that the quality of their lives usually remains good until the disease is very advanced, and that skilled intervention can prolong life, often very significantly.

But who was I to take on a book like this? I was a writer, after all, not a health care professional or a cancer expert. Nor could I speak with the authority of direct personal experience, not being a metastatic breast cancer patient myself.

It was the trust given to me by the people I've interviewed, many of whom have become friends, that assured me that I could do it. They knew that I was a breast cancer survivor who had loved and lost many friends from this disease, friends whose lives I wished to honor through letting their words live on. They knew of my deepest beliefs: that mindful exploration of the self is crucial if we are to be fully alive, that living fully is the best and only antidote to mortality, and that those on the edge of life can tell us more about this than anyone.

And so they've let me into their lives, honoring me with their friendship. Mary D'Angelo, Ellen Scheiner and Penny Lebow had already been "real life" friends when I began this book. Although she never knew about this project, Jenilu Schoolman and I corresponded often in the year before she died. Months before I began work on this book, members of the Breast Cancer List started meeting in person, and forming close friendships. Glenn and Barb Clabo visited twice, following a long personal correspondence. Lisann Charland, JB Boggs, Sandra Yandell and Caren Buffum attended some of the writing workshops I offer to cancer patients. And in October 1996, at the first large gathering of the List, I had the great and poignant joy of meeting many of those I had interviewed for this book for the first time in person. Hugging and talking with Lucie and Cy Shuster, Bob Stafford, Kathy and Chuck Stone, PJ and Mike Hagler, Sharon and Lloyd Multhauf, Chris Tribur, Joleene Kolenberg, and Barb Pender was an extraordinary experience. Seeing them let me feel their confidence in me, which I hope has helped me to write about their lives with greater authority. It is a measure of their pride in this project that all have asked me to use their real names.

No writer comes to a subject without personal investment and bias. My own heedless strategy has often been to rush headlong in the direction of whatever I fear, to find out anything and everything about it. This was no exception. Still, I wondered if my own fears of recurrence might distort my perceptions, or lead me to sentimentalize some of the more difficult realities of metastatic disease. How could it not be alarming to know all the various ways this relentless disease can strike, or how toxic and debilitating some of the treatments can be? How could it not be sad to lose people I'd come to care about? All this is certainly true. But I also know that having a life-threatening illness prepares the crucial and neglected arena for some of our deepest, most difficult engagements. With psychiatrist Arthur Kleinman, I have come to believe that, "Nothing so concentrates experience and clarifies the central conditions of living as serious illness." For me, it has been inspiring, even comforting, to know that ordinary people are able to find the resources within themselves when they need to, for the journey all of us must make.

What to expect from this book

This book is based on the firm belief that knowing more about metastatic breast cancer, and reading what other people have experienced with the disease, will be of help, both practically and emotionally. It subscribes to the idea that with good support and a sense of kinship with others, you will likely surprise yourself with your resilience in facing what lies ahead. Some of this book won't be easy to read. Some parts will be scary, or depressing. But some parts will be enlightening and uplifting, too.

If you are dealing with metastatic breast cancer, it's likely that you've been feeling more alone since being diagnosed with advanced disease. Understandably, you are frightened and confused. What lies ahead, you ask yourself. How will I cope? How will my family manage? Though each person, each case, is different, it does help to know that others have gone ahead and will freely and honestly share what they've learned.

If you have the kind of temperament that tends to magnify the unknown, creating unrealistic terrors, it will be reassuring to know more about the realities of metastatic disease, even when they are not encouraging. Those realities usually seem doable, taken day by day, in contrast to whatever unnamed and amorphous dread you may have been carrying. It's an odd paradox, perhaps, but hearing about the experiences of those who are living what you fear most can often be strangely comforting. These women and men have learned to live with the disease, sometimes for many, many years. During part of this time, they may be immersed in symptoms and cancer treatments, but at other times, they are able to carry on with their lives quite normally.

If you know that you do better by taking information in slowly, and shielding yourself from some of the harsher realities, many sections of this book may still be meaningful. Having placed your trust in your treatment team, you may not want to know a lot of medical details or how the disease may progress or be treated. Hearing how other people cope with side effects may help, however, or you may want to read how husbands really feel about their wives' illness. The sections on sources of hope and spirituality may speak to you. Something another person shares that helps them remain optimistic may be of real help. Just because you don't want to read all the "gory details" doesn't mean you have to isolate yourself from what other people who've been there before you have to say. The key is in knowing yourself, and what you need. As so many have observed, cancer can be a great teacher in this regard.

If you are the husband or partner of a woman with metastatic breast cancer, you are in distress as well. This is happening to you, too. Often, the emotional needs of husbands and other family members are swept aside in the pressing struggle to deal with the disease. Throughout these pages, husbands and partners talk candidly about the stresses illness has placed on their marriages and families, and the ways they and their wives or partners have found to support one another at every stage of the disease.

Through the stories in this book, you'll come to see that women and men are still able to live their lives with metastatic breast cancer, however grim the prognosis may at first appear, and that while a cure may be remote, a recurrence does not mean the immediate death that people imagine. You'll learn that there is always hope for something, whether an extended remission, a long awaited graduation or wedding or grandchild, a newly cherished friendship, or even the beauty of a single day, or hour. Hearing from these extraordinary but ordinary people offers the hope that you, too, can cope with this disease. These stories can help you find the strength and tenacity within yourself to meet the challenge of such a crisis. These people are not superwomen or supermen. If they can do it, so can you.

In these pages, you will find three important kinds of tools: practical information, common ground, and new sources of inspiration and hope.

Practical information. From the complex tangle of information on metastatic breast cancer and its many treatments, this book will endeavor to help sort out what is known from what is not yet known. There is nothing simple about this disease. Though certain generalizations can be made, breast cancer is not a single disease, and its course is unpredictable.

Every case is highly individual--because of the pathology of the tumor, the mechanism of its spread and your own unique biology. All of these are subject to change over time. Not even the most skilled oncologist can accurately predict exactly which treatment will work at a particular time and what the course of disease is likely to be. Ongoing research enables doctors to make educated guesses about the most effective treatments, based on statistical probabilities of success. But no treatment works in every case. Because new research is constantly evolving, current state of the art treatments as of this writing may well be outdated by the time you read this. Instead, this book will focus on how to find out what you need to know about your particular disease and the best treatments available to you at the time you need them.

Once there were few treatment options for women with metastatic breast cancer. Now there are many hormonal and chemotherapy regimens, some of which are accepted as a standard of care, and others which are controversial, highly toxic, and still unproven, since they are undergoing clinical trials. Treatment choices are often extremely difficult, and require a degree of self-knowledge as well as unbiased medical consultation and information.

Because treatment information tends to be both time and case sensitive, this book will focus, instead, on developing a process for gathering good, sound information: through seeking other medical opinions, searching for and reading research studies, asking your oncologist to share his or her reasoning with you, investigating clinical trials, asking for information through the telephone and Internet, and talking with other people who are struggling with the same issues.

By contrast, since many of the side effects and other problems associated with treatment for metastatic breast cancer are similar from patient to patient, you are likely to find useful and reassuring information by reading what others have experienced and how they have coped.

Because there have been some exciting and hopeful developments in breast cancer treatment in the year since this book's first publication, this revised edition includes several sections containing updated information about changes in conventional treatment, as well as new drugs and promising clinical and laboratory research. In particular, the ongoing development of targeted and relatively non-toxic treatments shows new promise for transforming a lethal disease into a manageable, chronic condition.

Appendix B, Resources, is keyed to the subject matter discussed in each chapter, and will suggest other sources of reading and information.

Common ground. As diverse as treatment decisions may be, the psychological and spiritual issues people face as they contend with life-threatening illness are universal. Because you are human, you can empathize with others, relate their struggles, disappointments and triumphs to those in your own life, and draw conclusions about your own situation. Maybe you have been feeling out of control, frightened and isolated. Reading about other people going through this will help you to understand that your feelings are normal, given the circumstances, and that no one needs to feel alone with this disease. As you learn more and develop strategies for handling the changes in your day-to-day life, feelings of anxiety and loss of control may lessen. Reading about the ways other people have managed to cope may give you ideas on what you can do for yourself and those you love. Certainly, hearing the stories in this book will make you feel less alone.

Sources of knowledge and hope. This book is all about life, about learning how to live with disease. It is based on the possibility of transformation in the most painful of circumstances. But it is not about staying "positive" and keeping "negative" thoughts and feelings away. This aspect of life, coping with serious illness, is pretty messy and confusing, for anyone. Denying this turns out not to be a very effective strategy, and has the effect of making people who are ill feel even more isolated. Real help comes from hearing real stories, and from learning you are not alone. So there won't be any simple formulas and how-to lists in this book. Nothing you can clip on the refrigerator with a magnet.

Out of the pain and depths of illness, new and hard-won bonds of love can sometimes be forged. Moments of beauty and clarity of mind can be savored. Meaning and renewal of faith can be pursued. In this book, you'll see over and over again how ordinary people in difficult circumstances are able to call upon resources in themselves they never knew they possessed. They have learned to reach out to others to give and receive support and help. They have moved from paralyzing anxiety and despair to a state of acceptance and intense aliveness in the moment. They have found ways to strengthen their faith and spirituality, to prepare and support their families and friends. They have done it, and so can you. No one has to take this journey alone.

Ordinary heroes

Most of us would agree that the people who live in the pages of this book are heroes, yet not a single one would claim that label. There is nothing more human, more real, than confronting the loss of health and independence, of able-bodied, pain-free life, and ultimately of everything and everyone held dear--whether this comes prematurely or at the end of a long life. These heroes find nothing so remarkable in their ability to do this. On a day-to-day level, they are only doing their best.

In an interview, and with characteristic modesty, foreign correspondent Terry Anderson, held hostage in Iran for so many months, spoke of his captivity in a way that is familiar to many of those who have to cope with life-threatening illness. "I don't think of myself as a hero. A hero is someone who makes difficult choices. I had no choices--I was chained to the wall. I did what I had to do, to get by."

In her bafflement and frustration at how others responded to her nearly twelve years of dealing with breast cancer, Caren Buffum wrote:

I understand what a person thinks they mean when they say "I couldn't go through what you are going through," but what does that really mean? Would they commit suicide if they had to deal with cancer? Who thinks they can go through this? From my side of things, I don't feel at all noble or brave or whatever quality I am being assigned. I consider myself to be coping well, and yet, I have not met too many cancer patients who are not in some way coping admirably, all things considered.

About the people in this book

A caveat, before we proceed. Throughout the chapters that follow, readers should note that the experiences of the people whose voices come alive on these pages may not be typical of the larger population of all women and men dealing with metastatic breast cancer. While it's my hope that the forms their disease has taken, and their emotional responses to illness, are representative--at least of women and their partners who are willing and motivated to read and discuss their advanced breast cancer--this small group of people is not randomly chosen.

Throughout the book, I refer almost exclusively to those with metastatic breast cancer as "she." Breast cancer does occur in men, however, though men represent less than one percent of cases, about 1,400 each year in the United States. Clearly metastatic breast cancer is largely a women's disease. Although I have included the experiences of a man with metastatic breast cancer--a man who is committed to getting the word out that men are also at risk--for simplicity's sake, I have elected to use female pronouns when speaking in general terms.

In general, breast cancer is also a disease associated with aging. Although it appears to be the case that pre-menopausal women with breast cancer sometimes have more rapidly growing, aggressive, hormonally negative cancers, it is still true that three quarters of women diagnosed with breast cancer are over 50 years of age, and that the overall incidence is significantly higher in older women. It goes without saying that metastatic breast cancer is likely to have an entirely different meaning in the twilight years of a long life than it does for a 40-year-old woman with a young family still to raise.

These women and men I've written about here, as a group, differ significantly by virtue of being younger, more well-educated and affluent than the population at large. By and large, their life circumstances are probably representative of the demographics of American Internet users, where minorities and lower-income people are not well represented. Certainly, the people I interviewed are more articulate and self-disclosing, more willing to grapple with the difficult issues head-on. Most of them have enjoyed stable, long-term relationships and have supportive families. They have had only minor problems with access to good medical care, and health insurance coverage. Care should be taken not to generalize, therefore, from these experiences to those of all people in similar medical circumstances. Not only is the disease itself variable, but the responses to illness are as unique and individual as the portraits on these pages.

Most women with metastatic breast cancer would probably not choose to be in contact with others who have the disease, whether in support groups or elsewhere--although by doing so they might well feel supported and decrease their sense of isolation. Nor is it likely that they would wish to be interviewed for a book such as this--although telling their stories might give them a needed opportunity to externalize their thoughts and feelings, and provide a structure to contain fearful events. And it's unclear whether they would be motivated to read about the experience of others--although they, too, might find echoes there, and common ground, if they did. They might even come to a place where the solace of these echoes might outweigh the anxiety of hearing what can happen in the course of the disease.

Telling the truth about life

In October of 1996, I met many of the people interviewed in this book for the first time. We gathered in a Chicago hotel for the first of what we hope will become an annual event. Though they had never met face to face, or even talked on the telephone before, people came from as far away as Germany and Hawaii, so important was the Breast Cancer List in their lives. Some used canes to walk, some sported wigs, scarves, or proudly shaven bald heads, or showed other signs of the ravages of treatment or disease. But faces shone. Eyes gleamed. People couldn't stop talking and hugging one another. We all agreed that everyone looked different than we'd expected, but that hardly mattered. Never had physical form seemed more clearly the container for spirit. Long before we met in Chicago, we'd passed the stage of superficial chit-chat, and shared our deepest pains and joys. The weekend soon became an extraordinary outpouring of love and laughter.

Sunday morning, Bob Stafford, who was a pastor in a small town in Indiana before metastatic breast cancer forced him to retire, held a service in which he spoke movingly of the love he'd found on the List, and of those who had died. Drawing close to the end of his life, and in daily pain, his thoughts had turned to finding grace, to walking with God. The next day, when we had all returned home, Bob wrote to the List, confessing to feeling a little let down, now that the festivities were over. One of the many people who wrote back with encouragement was Barb Pender, a woman of strong religious faith, also struggling with metastatic disease.

Like I said Sunday morning, I know what the Lord looks like--I walked down Michigan Avenue with Him, shopped at Marshall Fields with Him, talked with Him till 2:30 in the morning, broke bread with Him, sat in the Hard Rock Cafe with Him, laughed with Him, cried with Him--and my dear brother Bob, you must only look in the mirror to see Him yourself, for you are wonderful!

These people have learned to live with what the two women in the New York mastectomy salon were unwilling to face. For people who face life-threatening illness, and their families, this is much more than just a "depressing subject." It is the reality they must live with every day. It is my hope that this book and the stories you find here will offer new information and some relief from isolation, and that you will gather strength from the remarkable tenacity and spirit that animates the words of these women and men who have generously shared their lives so that others could feel less alone.

Bob Stafford said it well:

I think when you get into this position, all phoniness is gone. There is no one to impress or delude. You can become transparent because it doesn't matter what people think about you. I see it in people who are very sick that I come in contact with. They will tell you the truth about life and themselves.

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