Author Musa Mayer wrote Advanced Breast Cancer: Living With Metastatic Disease to help those people dealing with recurrence or Stage IV breast cancer and their families. Her book, just released in its second edition, effectively combines the medical and the practical with deeply resonant personal stories. "Mayer has given people with advanced breast cancer a voice, says Linda Lamb, Musa's editor. "Now it's becoming more common to treat advanced breast cancer as a chronic disease. The book is helpful because, for a lot of people, the truth is much better than they think it's going to be. They are living longer, finding each other, and looking to make the best of it. And it's possible they may overcome it."

Interview Contents:

• About the book
• New developments in treatment
• Coping and emotional support
• Mass media attention to breast cancer issues

About the Book

Houston:

Let's start with a little background on how Advanced Breast Cancer: Living With Metastatic Disease came about. Did you have the idea for this book as a follow-up to "Examining Myself," your memoir about your own primary breast cancer?

Mayer:

Indirectly, yes. I joined the Breast Cancer Listserv, a large, international Internet discussion group, shortly after it was formed in 1994, about a year after my memoir was published. I was impressed at the connections that people were making and by the stories they were telling. I continued to learn more about the disease, and the way people cope with it, which took me far beyond my own experience and that of my immediate face-to-face support group. Initially, talking about advanced breast cancer was a very threatening topic for most of us. As a woman's cancer advanced, it was not uncommon for her to just disappear from the listserv. Sometimes we would find out later that she had died. Somebody else, often a family member, would send us a message. It was devastating.

Disease progression was a taboo topic. But as time went on, some of the pillars of that community began to have recurrences and opened up the topic for all of us. What began as threatening turned into really unusually rich and deep sharing not seen very much in the "real world" breast cancer community. There are many face-to-face support groups all around the country for breast cancer survivors, but relatively few deal with the realities of metastatic disease. Yet here was a setting where people who might otherwise have been isolated were able to discuss their experiences openly. Those of us who had not had recurrences were also able to gain some insight. This ongoing dialogue so impressed me that fairly early on, I got the idea to collect some of these voices together in book form. I knew that there were tens of thousands of people dealing with advanced breast cancer, not only women but also their families and friends, who had need of this because there was really no other resource for them.

When Linda Lamb, my editor at O'Reilly, approached me on-line to do a breast cancer book, I said, "Yes, but not another book on primary breast cancer. That's been done very well by other people." I asked her if she'd be interested in a book on advance breast cancer, because there was none. Because Linda had the same sense that I did about the value of the communication on the Breast Cancer Listserv, she was willing to take a chance.

Houston:

The book was first published in 1997. What changes or additions prompted the second edition?

Mayer:

Aside from updating the Resources section, Glossary, and Drug Appendix, I took the opportunity to make a significant addition to my Treatments chapter. It has been a banner year in terms of breast cancer research. Many new developments came to fruition from clinical trials that had been in process for quite a long time. The Treatments chapter has also been completely rewritten to reflect improvements in conventional treatments and a closer look at the clinical trials. In addition, the chapter looks at new targeted biological therapies that have emerged this year, for example: gene therapies, monoclonal antibodies like the new drug Herceptin, just recently approved by the FDA, cancer vaccines, immunotherapy approaches, anti angiogenesis factors now in clinical trials, and many other potentially promising new treatments.

Houston:

Your book covers a lot of territory and provides an exhaustive summary of emotional and coping issues as well as factual/practical information. Could you summarize the key messages or points of the book?

Mayer:

Well, there are many, because I tried to be comprehensive.

• It's natural to feel shock and grief with recurrence. These overwhelming emotions can be dealt with and will subside in time. The majority of people dealing with metastatic breast cancer will find ways to adapt to what feels so overwhelming at first.

• While metastatic breast cancer isn't currently curable, it is treatable and can be approached and managed as a chronic disease. There are many effective treatments and much current research that is promising.

• It's vitally important for patients to learn about their disease, to research the medical literature or have somebody close to them do so. Take an active, assertive role in treatment; choose a medical team wisely, and don't be afraid to seek second opinions. Form a good cooperative relationship with an oncologist and other health care providers. Never lose sight of the fact that treatment decisions belong to the patient, and that through acquiring knowledge, a sense of control will be possible.

• In the vast majority of cases, real help with emotional and physical distress is available even though it sometimes has to be actively sought. There are ways to relieve the symptoms from treatments and the disease itself. Even depression, anxiety, and pain can be effectively treated in almost every case. This is not to say one will automatically receive good treatment. It may take some work to make this happen.

• People with advanced cancer often experience social withdrawal. This may occur on the part of others, or they themselves may withdraw because of their sense that they've come to represent what friends or family members have a very difficult time facing. My first message to them is that they are not alone. Other people experience this withdrawal and awkwardness; there are literally tens of thousands of other people in their predicament.

• Reaching out to others in the same situation is crucial. This can be an enormous relief from isolation, fear, and loneliness. Talking openly with family and friends helps everyone work through the process. Sparing other people often doesn't spare anyone in the end.

• Don't fall into the trap of meeting the expectations of other people in assuming the role of the noble, uncomplaining cancer patient. It's easy to feel guilty when one isn't measuring up to that impossible standard. It's important to realize that really is a need of other people to manage their own fears.

• Everyone has difficulty handling uncertainty, pain, waiting for test results, getting bad news about the disease's progression, and dealing with loss. This is a natural and human reaction. That's why it's so important to hear honestly about others' experiences and to ask for help when needed.

• There are many different coping styles and strategies. Some find living in the moment works best for them; others rely heavily on spiritual communities for sustenance; still others deepen their relationships or seek meaning in doing something important to them, like traveling or creative work. It's important to feel empowered to find those ways and get support. This is not something one can do alone.

• It's good to gradually come to terms with how one would like one's life to end. Some end-of-life choices, particularly medical choices, become crucial decisions. It's important to be able to discuss openly when to stop active treatment and enter into palliative care, and when to involve hospice.

• When survival isn't possible, people can and do find ways to sustain hope, even in that situation, through adjusting their expectations, cherishing relationships and experiences, and looking forward to special events.

• Finally, people with metastatic breast cancer may die of their disease ultimately, but what helps them the most is learning how to live with the disease.

New Developments in Treatment

Houston:

Which of the newer treatment developments discussed in your book do you find most hopeful? Don't some of those reflect an overall new direction in research?

Mayer:

The whole thrust of the more innovative research has been towards what is called targeted therapy. The goal of most chemotherapy drugs used to treat breast cancer, with some notable exceptions, has been to essentially poison the cancer cell by interfering with its reproductive process. The problem is, these chemotherapy drugs don't specifically target only cancer cells, but affect other rapidly dividing cells in the body, producing a host of side effects. That's what causes the hair loss, nausea and vomiting, and low blood counts.

Tamoxifen would have to be considered a targeted drug, in the sense that it only affects the estrogen metabolism in the body. Some of the newer anti-estrogens appear to be even more effective, with even fewer side effects. So I think we're going to see some new research with hormonal manipulation of breast cancers, as well as new gene therapies, new monoclonal antibodies, and anti-angiogenesis factors. The main advantage is that more and more of these treatments will go directly to the tumor cell to interact with it, either through inhibiting growth factors or some other process.

Hard-won increases in research funding during the last decade are beginning to yield good potential directions in treatment. We'll see much more of that in the next decade. Some of this is the result of increased research funding, in which breast cancer advocates played a very large role. Of course, basic science and the advances in molecular biology in general have also played a big role. The greater understanding of the human genome, and mapping different breast cancer related genes, should suggest potential therapies.

Houston:

What about the medical community? Has traditional medical response to advanced breast cancer has been "there's nothing we can do" rather than approaching it as a chronic, treatable disease? Are these promising advances changing the medical community's attitude toward breast cancer treatment?

Mayer:

Until the last few years, available medical treatments just haven't been very effective with metastatic breast cancer, so the idea of treating the disease as chronic is a relatively recent development, as there are more and more treatments that work in different ways available. It takes time for the latest drug that is now in clinical trials to trickle down to common practice in oncology. Clinical trials have to be replicated before treatments are put into common usage. But women looking for new treatments are often able to find oncologists willing to try new drugs. For example, I know a number of people who have been undergoing treatment with the drug Herceptin now. I've been following their responses to this new drug with great interest.

However, the enormous amount of media attention for every new potential drug has confused people. The media always simplifies and exaggerates the medical realities, thereby raising the hopes of people far beyond what these drugs are really capable of providing in the early days. Herceptin does seem to have fewer side effects for most people, although it carries some risk of heart damage. It's been tested in combination with chemotherapy drugs with a certain group of people, as well as on its own, but much research remains to be done. I'm sure most oncologists are using it with some caution by comparison with the tried and true drugs.

In general, I think most enlightened oncologists approach most forms of metastatic breast cancer as a chronic disease to be managed. It's not a curable disease yet. That's really not changed in any way, yet, unfortunately. The cancer continually mutates in reaction to drugs introduced and used. Cancer cells become increasingly resistant to any form of intervention and eventually nothing works. The person becomes too debilitated to undergo further treatment. That's really what the progression of the disease looks like for most people.

With advanced breast cancer, it can be said, in general, that if more less-toxic drugs acting in unique ways are available, people will live longer with the disease. In treatment of metastatic disease, generally the first drugs used are the most effective and give the most remission time. Subsequently, remission time tends to be reduced and fewer people respond. But that's only a generalization. It's an enormously complex field. It's difficult to say anything that's true for everybody, much more difficult than talking about primary breast cancer because advanced breast cancer can involve any organ system or any part of the body.

Houston:

Indeed, one of the general messages of your book is that there simply is no single, clear-cut treatment course of action for advanced breast cancer. Isn't that difficult for advanced breast cancer patients to accept?

Mayer:

Yes, and there's a great deal of uncertainty. Uncertainty is the enemy of the woman newly diagnosed with breast cancer, not knowing if she will have a recurrence or how much time she will have that's disease-free. But uncertainty becomes a friend of the person with metastatic breast cancer. Yes, it's not curable and virtually everyone eventually dies of advanced disease, but the range of how long people live, and their quality of life, is continually improving. There is no way to predict how any individual person will do. Beyond some obviously grave signs and symptoms, uncertainty and variability allow people with advanced disease some room for hope.

Houston:

Do you think the reason there hasn't been much information available about advanced breast cancer is simply a function of less research previously?

Mayer:

I don't think so. I think it really is about fear. Fear and fatalism. Most of this breast cancer information explosion has come about since I was diagnosed nearly ten years ago. In that time, we've gone from a few minor resources to an variety of resources and increased public attention. Most of that has been fueled by survivors who, with few exceptions, are living in fear of recurrence.

In my experience, there is a certain amount of avoidance. For example, the National Alliance of Breast Cancer Organizations publishes an annual 70 or 80-page resources guide. When I first started thinking of writing my book, this guide had only half a page on recurrent and metastatic breast cancer, and that half page dealt primarily with hospice and pain relief. This really indicated the thinking -- even within the enlightened breast cancer community -- that metastatic breast cancer means a pretty rapid road to the grave, that it's a painful thing to talk about, frightening, and threatening to women.

There's been pressure on major cancer organizations to put an upbeat face on breast cancer, so women will be unafraid to do what it takes for early detection. The fear is that if breast cancer is seen as a fatal disease, people will avoid any kind of screening. The American Cancer Society consistently talks about 95% survival rates if caught early. Of course, what they don't say is: that's the five-year survival rate, not even a disease-free survival rate, and only for Stage One breast cancer. It does not accurately reflect the disease's realities. If you take all women diagnosed with breast cancer as an aggregate group and look at them 15 years later, only somewhere between 55 and 60% of them will be alive. The statistics are not anywhere near as positive as some cancer organizations make them out to be. However, breast cancer survival rates are improving unquestionably as screening improves early detection, and treatments improve. We're living now in an era where sophisticated chemotherapy and hormonal manipulation delay recurrence. People live for a much longer period, even if they do have recurrences.

In my view, since women with primary breast cancer are going to worry about recurrence anyway, whether or not anyone talks about it, it is far better to give an open and accurate account of what advanced disease is really like. It dispels some of the worst fears, and eases anxiety with information.

Houston:

Isn't there some truth to the need for putting a positive face on it so people don't avoid screening altogether?

Mayer:

Yes, but that leaves the people who are dealing with metastatic disease out in the cold, and isolated. It's very telling that there are literally hundreds of books on breast cancer, but mine is the first on advanced breast cancer. There's nothing else. There are indeed chapters about recurrence in a few other books, but they don't go into the experiences in great detail. They don't deal with the aspect of the disease I am trying to cover. They can't within that framework.

Houston:

Given the overwhelming amount of information about evolving treatment options and resources demonstrated by your book, how can breast cancer patients keep current? Certainly the accessibility of information over the Internet right now must give them a tremendous advantage over earlier breast cancer patients.

Mayer:

Yes, but there's also information overload. Even I have trouble dealing with it, and I've been following news on breast cancer for many years now. I can imagine how overwhelming it is for many people. Access to current information is important for two main reasons: for the newly diagnosed person or someone just starting treatment who wants to be able to keep up with what's new. Or, when a person has a treatment decision to make, it's important to be informed. The rest of the time, using the Internet is a matter of individual inclination and motivation. There are also a number of really good basic texts now for primary breast cancer, such as Dr. Susan Love's Breast Book. I'm hoping my book will become a first-stop resource for people dealing with recurrence, to give them an idea of where to get further information.

Beyond that, people need to follow their own inclinations about joining support groups. In general, that's always a good idea. I recommend contacting either a support organization like NABCO, Y-Me, or one of the literally hundreds of regional and local support organizations. This will put them in touch with very informed people who can help tailor an information search. Someone brand new to this needs a more experienced person to lead her by the hand a little bit at first. The Internet is filled with useless information, as well as incredibly good information.

Houston:

How does someone distinguish between the two?

Mayer:

Well, my list of selected resources in connection with the book is posted in its entirety on this website, so that's a place to start.

I usually send people to CancerNet on the National Cancer Institute's Web site for information first . This Web site contains patient and physician information statements that give a good picture of the latest traditional medical thinking on any cancer treatment. These are available on the Internet, and also by fax and by mail, to anybody in the country, by calling the NCI number, 1 800-4CANCER. This provides a good way for cancer patients to begin to understand what they're dealing with.

Coping and Emotional Support

Houston:

Since yours is the first book on living with metastatic breast cancer, are you getting a lot of feedback?

Mayer:

I'm getting feedback gradually as the word gets out, certainly from women who've read the book. They have contacted me with reactions like: "Oh, if only I'd had this book when I was first diagnosed. You know, I had a year of terror and isolation. This would have made me feel so much better and given me direction."

One woman, who joined the Breast Cancer Listserv as a result of reading my book, wrote: "I want you to know how much your book means to me. I'm currently in treatment for breast cancer for the fourth time since 1987, second time for bone metastasis. I live in a small town and felt I was the only person in the world who couldn't get rid of cancer. Your book reassured me that I had a lot of company, and has given me many role models for dealing with the disease. I thank you and those profiled in your book for sharing their hopes and fears. When I mentioned your book to the oncologist, he asked me if I was frightened after reading about what I was facing. I had to reply that, to the contrary, it has given me courage to continue my fight." Comments like this are very gratifying, because this is the sort of woman for whom I wrote the book. It's good to know that it helps.

Houston:

Although the book is primarily written for women dealing with advanced breast cancer, are there others who would benefit from reading it?

Mayer:

Absolutely. Some of the most touching letters I've gotten have been from family members of people with advanced disease and their friends. A friend of a woman in the book wrote: "This book for me has been a unique experience. It's a printed living tribute to those whose words and thoughts are shared, a tribute to the loved ones who were kind enough to share experiences, a legacy to be proud of, shared, remembered, learned from."

I also tried to give support to husbands and partners with a chapter called "It's Happening to Us, Too." Many times it's harder emotionally on the person who loves the patient most than it is on the patient herself. I wanted their voices to be heard, and for them to realize they are not alone. I felt it was important to give suggestions about getting care for the caregivers, too.

I interviewed five couples, and during the time I was working on this book, one of the wives died. Her husband gave the extraordinary gift of describing for me the process of his wife's death. I got the most touching letter from his mother, saying that she had never understood her son before, that she got to see a kind of tenderness and depth in him that she had never perceived. It really deepened their relationship.

People going through this experience aren't always able to articulate what it's like for them. They can describe it in some limited ways, but being so ill can be overwhelming at times and it's hard to talk when you're in pain, fatigued or have other symptoms. So one big problem is that family and friends don't really understand what it's like for the person. So they tend to focus on the medical details and not on the person living through this. I think the book succeeds in opening the door to that deeper experience. I've gotten a number of letters from brothers and sisters of people dealing with metastatic disease, saying that they understood for the first time what the experience was. A number of women have actually given this book to their family members, saying, "Read this, and come back and ask questions."

Houston:

What about the woman or person newly diagnosed with breast cancer? Is there a "right time" to reveal the bigger picture about breast cancer as presented in this book?

Mayer:

Perhaps. I'm somewhat of an existentialist by nature. I believe that it's an important part of the human dilemma and the human condition to confront our mortality. We all have to face the fact that we don't live forever, that there is a finite quality to our lives. How and when this comes is far less important than our ability to approach it, make sense of it, experience it fully, and express to others what our experience is. I don't think that there is any universal prescription for when the right time is - but there's no doubt that a diagnosis of cancer offers a window of opportunity for this process.

Other people with cancer sometimes will say to somebody recently diagnosed who has finished her treatment and gone back to her life, "But don't you realize it can come back at any time? Don't you realize that there's never a time that you can't live without fear of recurrence? Don't you realize how many people die?" I'm always taken aback by this kind of statement. Is that a kind thing or helpful thing to do? I don't think so.

I think that denial has gotten very bad press! One of the women that I interviewed talks about this in the video we made in which nine of the people in the book share their experiences. It's called "Holding Tight, Letting Go." Sharon recurred after about eight years, and spent most of those eight years believing she was cured. She now believes, even though she's dealing with progressive disease, that being able to sustain that belief during those eight years was a really wonderful thing. I agree. I don't think it's necessary to live one's life with a constant awareness of death. But by the same token, if you never confront mortality, you're losing an enormous opportunity to experience some of the most meaningful aspects of life, which really only reveal themselves in considering that life is finite.

If a newly diagnosed woman says to me that she thinks she's cured, I'm not likely to argue with that as long as she's going through her treatment and follow-up in a way that shows awareness of the realities of the disease. I figure that if she needs to deal with a recurrence, she'll deal with it when it happens.

I'm just trying to do what it takes so these voices can be heard and become part of the general dialogue about breast cancer. I have strong feelings about our culture denying the reality that people are dying of this disease. There are literally hundreds of thousands of women and men living with advanced breast cancer at any given moment. Denying their reality is a real disservice to them and to all of us, because they have something to offer. Voices on the edge of life can teach us a great deal.

Houston:

Yet your book also acknowledges that not everyone chooses the path of full knowledge.

Mayer:

There are as many ways of coping as there are individuals. Most of the people I met on the Internet participating in this kind of discussion are people like me. Their primary coping style is through information-seeking. In other words, their anxiety is reduced somewhat by finding out everything that they can about that which they fear most. This isn't true of everybody, or even the majority, most likely. There are plenty of people who deal with anxiety primarily by compartmentalizing, by distracting themselves, or by denying the reality of what they're experiencing. Coping strategies are laid down early in life, and they're probably not very subject to change.

I've witnessed a number of times people with advanced cancer who won't talk about their illness, won't acknowledge what's happening, and will go to their deaths without ever really being willing to look at it or face it. I think this represents a loss of opportunity. It's particularly difficult for their families because they don't get to have a sense of completion. They don't get to say goodbye. They don't get to do lots of things. It's also problematic in terms of treatment choices because if you can't talk about it, you can't explore what the best choices are. But for many people, this is the way they know and this is what they are going to do. Who am I to judge that?

Houston:

Certainly as a therapist and writer, information seeking must come naturally to you. Did you undertake this book as part of your own personal coping with the possibility of recurrence?

Mayer:

Very much so. Both of my two previous books have been memoirs. They've been books about my own life, in which I've dealt with difficult aspects of my own life through writing. Writing has been an enormous therapeutic tool for me. The exploration and transformation of my life experience and turning it into a narrative is meaningful for me. What I can find in those experiences has been central to my life, especially in the last 20 years. Before that, I worked as a therapist, which of course is not unrelated.

Houston:

And in your case, you've been able to bring these two professional experiences together in the writing seminars you lead. Tell us about these.

Mayer:

I have spent a lot of time over the last four years offering writing workshops for people with any kind of life-threatening illness, and for those close to them, because I deeply believe in the writing process. I don't think it's the only method of personal growth, by any means, but it's something free and accessible to all of us at any time. Writing letters to friends or to buddies on the Internet, or keeping a private journal, or writing articles about your experience for publication -- whatever form it takes -- I think writing is an inherently healing process.

So every year, I travel and offer a number of free writing workshops, everything from one evening to intensive weekend retreats for breast cancer survivors. Mostly what I do is a day-long workshop that I call "Writing Our Way Home." I have made a study of what I call "illness narratives" in literature. I'm very interested in the form, so I also discuss how others have found meaning through writing about illness experiences.

Mass Media Attention to Breast Cancer Issues

Houston:

One of the things you've already alluded to is the incredible increase in media attention to breast cancer issues. Do you think this is good or are there any negative aspects to it?

Mayer:

I think the acceleration of media attention is good and important. I also think that it has increased fear. A couple of studies have shown that women do not accurately perceive their breast cancer risks. They think they are at much greater risk than they really are. More women die of heart disease than die of breast cancer, by far. There is a certain amount of hysteria combined with unrealistic perception in media coverage. On the one hand there's this hysteria of "My God, we're all going to get it," and on the other hand there's: "Don't worry, if you get it, you can be cured." Neither is a realistic picture. The problem is that the picture is so complex, and the media does not deal with complexity well. They want a sound byte.

Houston:

In general, though, do you think events like Breast Cancer Awareness Month are helpful in the overall scheme of things?

Mayer:

I have mixed feelings about Breast Cancer Awareness Month, or, as advocacy organization Breast Cancer Action in San Francisco calls it, "Breast Cancer Industry Month." Where are we the rest of the time? Who's looking at environmental causes and how seriously? It opens up so many issues. One reason it gets such coverage is there are so many aspects to write about. Obviously research funding can only benefit from any media coverage.

Houston:

What are some aspects included in your book that aren't getting much "outside" media coverage?

Mayer:

Well, to reiterate, I don't think public perception of metastatic breast cancer is accurate. What we see in the media is a lot of discussion about new and promising treatments in breast cancer research. As an extreme example of media "hype," Dr. Judah Folkman's anti-angiogenesis therapy and Nobel laureate James Watson's claim that Folkman was going to cure cancer in two years. These days, we are getting glowing stories about the promise of Herceptin and profiles of women who've had long remissions from Herceptin. It's either those kinds of stories or sad pieces about young women with young children who have died. There's very little else. This seems to be the only way the media knows how to focus on it because, I suppose, those stories feel like news.

To me, it's news that people summon in themselves the courage and resourcefulness to live with this disease every day. We desperately need more frank discussions about that. Our society, by and large, avoids any kind of real attention to how people cope with incurable or terminal illnesses. That's particularly tragic given that the vast majority of us are going to confront this at some point in our lives.

Houston:

Is there anything else you would like to add?

Mayer:

Just that while it may sound as though the book is primarily or exclusively a synthesis of information for metastatic breast cancer patients and their families, I'd like to reinforce that, to me, the real heart of the book is the stories of the 35 or so people I interviewed, stories they told in their own words. Because I'm being interviewed as the author, these are my words, but their words are at least, if not more, important. Their words inspired me to undertake the book in the first place.

The book's first edition title was "Holding Tight, Letting Go." That phrase actually came from one of the women I interviewed, describing her feelings and experiences at the very end of her own breast cancer experience, holding tight to the people she loved, to life itself, and at the same time, preparing to let go. It seemed very evocative for many of the people I interviewed: a dual emphasis on living fully now while also facing and preparing for the reality of having an incurable, eventually terminal disease.