Treatment controversies are likely to make you feel profoundly uneasy. You may even avoid seeking another opinion for fear of being overwhelmed with contradictory information and advice. Whom should you trust? It's quite hard enough dealing with a life-threatening illness, but to also find that your doctors don't agree on treatment is even more disquieting. You are not alone in feeling this way. Jeff Belkora, a volunteer decision consultant at the Community Breast Health Project of Palo Alto, advises breast cancer patients that:

Not running into controversy in breast cancer may be a sign that you need to gather more information! Although the lack of consensus about how to treat breast cancer can be frightening, at least researchers, clinicians and patients are experimenting with new techniques and procedures, and generating "controversy." From their experiences and learning, you can strive to craft a strategy that you believe makes the most sense for you. But be prepared to make commitments: You will have to choose who and what to believe, and who and what to ignore. This may be difficult, for while no one has found a breast cancer treatment that dominates all others on every dimension, people do have favorites, and they tend to advocate them with passion. Each may appear convincing, even as they are contradictory. That's why you need time to analyze everything in a way that's comfortable for you. Aim to be comfortable and clear about the reasoning behind every breast cancer decision you make.¹

Since there is clearly some dose-response ratio with chemotherapy, in recent years there has been a trend toward the use of very aggressive treatment protocols, generally in patients under 50 with no other significant complicating health problems. This section will focus on one of these major controversies, involving the use of high-dose chemotherapy (HDC) with bone marrow or stem cell support (sometimes called "transplant" or "rescue") with metastatic breast cancer patients.

You should be aware that this article, while it goes into some detail on this issue, is not intended to provide a full or substantive sense of the treatment issues involved with HDC, but only a feeling for the nature and complexity of this controversy. If you are considering this treatment, think of this as a jumping-off place for your investigations. If you are not a candidate for this treatment, read it for the sense it may give of how physicians, scientists and patients work to resolve an important treatment controversy, as well as some of the less obvious confounding variables that come into play, concerning the economics and politics of health care choices.

While this procedure is often referred to in popular and professional literature by differing initials and names, for example, as autologous bone marrow transplant (ABMT), or peripheral stem-cell transplant or re rescue (PSCT; SCR), this article will refer to this treatment simply as high-dose chemotherapy, or HDC. HDC will thus be differentiated from intensive chemotherapy regimens which do not require stem-cell or bone-marrow rescue for treatment survival, but for which growth factors like Neupogen (granolocyte colony stimulating Factor, or G-CSF) that stimulate white blood cell production in the bone marrow are frequently required.

HDC involves the use of very high doses of varying combinations of standard chemotherapy drugs that would be fatal to the blood-cell-producing bone marrow without reinfusion of the patient's own previously harvested and frozen stem cells (the immature cells from the peripheral blood that form white and red cells and platelets) or bone marrow. The use of the patient's own stem cells, rather than those from a donor, is why this kind of transplant is called autologous. This treatment usually, though not invariably, follows an "induction" period where the "tumor burden" (amount of measurable cancer) is reduced through an intensive chemotherapy regimen. This also enables doctors to make sure the tumor is still sensitive to chemotherapy before the high doses are given, almost always a precondition for HDC.

The proponents of HDC believe that "hitting it hard" with high-dose chemotherapy, before the cancer has had a chance to become resistant to treatment, confers the best possibility of treatment success, at least for a subset of younger, otherwise healthy patients whose tumors are chemo-sensitive, who have limited disease and who can withstand the side effects. Depending on the drugs, dosage levels, general health and specific responses, the acute and delayed side effects of HDC may include, but are not limited to, nausea and vomiting, diarrhea, mouth and intestinal ulcers, bone marrow depression (leukopenia, thrombocytopenia, hemolytic anemia), anaphylaxis, peripheral neuropathy, lung damage, hearing loss, cardiac toxicity, acute infections, and a number of less common but serious symptoms like renal dysfunction, hepatic veno-occlusive disease, hemorrhagic cystitis and secondary cancers. High-dose chemotherapy means these drugs are given in doses from 3 to 31 times their standard dosage level, depending upon the combination.

The National Cancer Institute figures say that, according to the Autologous Blood and Marrow Transplant Registry-North America, the number of women with breast cancer receiving HDC grew from an estimated 522 in 1989 to 4,000 in 1994. "About one-third of all stem cell transplants reported to the Registry in 1992 were for breast cancer, making it the most common cancer being treated with this therapy." ² By 1995, 6,000 cases had been reported to the Registry,³ and it was estimated by the Registry director that the actual number of HDC procedures for breast cancer was twice that number.⁴

There is no question that HDC produces more complete and partial remissions following the treatment, and this has led to great excitement and enthusiasm. There are reports of women doing very well, with no apparent disease, several years following the treatment, but there are more reports of relapses within a few months, and a few reports of long-term bone marrow suppression and other side effects that are troublesome and even life-threatening. A certain small percentage of patients die from the toxicity of the procedure itself. While yet unproven, this treatment is being widely offered, with the vast majority of HDCs occurring outside of clinical trials, and covered by health insurance, despite resistance on the part of insurers. A significant number of court cases against insurers have been won by patients seeking this treatment. Reasons for the difficulty in enrolling patients into clinical trials are attributable both to physician and patient reluctance. According to the Women's Health Network:

Physicians have been reluctant to encourage their patients to enter these studies, and women themselves have balked at becoming study participants for a number of reasons. Experimental drugs require regulatory oversight that limits access to treatment only through clinical trials, but experimental medical procedures do not have this requirement. To the extent that patients can afford experimental procedures, they probably can find physicians who will provide the treatment outside of a clinical trial. Women are turning down clinical trials because they are afraid that they could be randomized to conventional chemotherapy rather than HDC with ABMT/BCT. Furthermore, it is often in the physician's and hospital's financial interest to offer the more aggressive treatment to patients who can pay for treatment (HDC with ABMT/BCT costs range from $50,000 to $200,000) or are insured for the procedure. Seven states now mandate insurance carrier coverage of HDC with ABMT/BCT for citizens, as does the U.S. for federal workers. ⁵

"Based on the recent studies, the mortality for this treatment has decreased substantially in the past few years," concurs oncologist Craig Henderson from the University of California, San Francisco. "However, it's not clear that high-dose chemotherapy with ABMT is the best treatment for any group of patients, that it will cure any patient that would not be cured by other treatments, or that it will prolong survival to a greater extent than commonly used conventional dose chemotherapy." ⁸

Dr. Karen Antman, Chief of Medical Oncology at Columbia Presbyterian Medical Center in New York City, urges careful patient selection. Patients with advanced refractory disease are not likely to benefit from the procedure, she warns, but goes on to say that of those untreated, chemo-sensitive patients who do achieve a complete response (CR), "A quarter to a half of those achieving CR have no evidence of progression with follow-up intervals of two to four years in trials at multiple institutions." ⁹

Dr. Gabriel Hortobagyi, of the MD Anderson Cancer Center at the University of Texas, reviewing a decade of Phase I and II trials of "dose intensification" (yet another term used for HDC), writes:

Results from these trials suggest that dose intensification with hemopoietic support markedly improves overall response rates and consistently results in complete remission rates approaching 50 percent in patients with previously untreated metastatic breast cancer. Although no study has demonstrated an improvement in median survival, several investigators suggest that 15 percent to 25 percent of patients treated with dose-intensive therapies remain in unmaintained remission 2 to 5 years after the procedure. It is uncertain whether this apparently reproducible group of long-term survivors is related to the beneficial effect of high-dose chemotherapy or to the extraordinary patient selection process undertaken in high-dose chemotherapy programs.¹⁰

But for doctors and patients to gain a really accurate sense of the relative effectiveness of HDC in relation to standard intensive chemotherapy, however, historical controls are not conclusive evidence. Women must be randomly assigned either to the experimental treatment or to the comparison treatment, which must be the best conventional standard-dose chemotherapy available. There are three current well-designed, randomized, controlled trials investigating HDC, both in women with metastatic breast cancer and in very high-risk Stage II/III primary breast cancer patients who have more than ten lymph nodes showing signs of cancer or who have inflammatory breast cancer. These multi-center trials, taking place throughout the country, have had considerable initial difficulties with enrollment, but expect, before the year 2000, to provide some real answers. It is likely that by the time you read this, more will have been clarified about which patients can actually be helped by this treatment, and which may do better or as well with conventional treatments with far less toxicity.

Some oncologists, like Dr. Yashar Hirshaut, have seen a number of their metastatic patients do remarkably well and go on to have extended disease-free remissions.

The best results are obtained when we hit hard with the initial treatment after a recurrence, so as to destroy as much of the disease as we can--and, if possible, all of it. If, despite our best efforts, the cancer again recurs, it may be because it has become resistant to the drugs in use. We may be able to prevent such a development by alternating different forms of chemotherapy or by refining the use of such techniques as bone-marrow transplant... placing the first and primary emphasis, whenever possible, on trying for a cure. We attempt to accomplish that goal with a minimum of disruption of life of the patient but with the understanding that when we are dealing with an aggressive cancer, we must act aggressively.¹²

Statistics show that there should be a 50 to 60 percent response rate with breast cancer with conventional chemotherapy, 70 percent with intensive chemotherapy, and maybe 80 percent with high-dose chemotherapy with stem-cell support. I don't think there's any doubt that marrow- and stem-cell supported high-dose chemotherapy can give you a better response rate. I just don't know if that translates into more time.

There's an art to this as well as a science. There are many effective chemotherapy protocols and ways of manipulating hormones. We can rest a person on hormones and then return her to chemotherapy. If you just bring a woman in and shoot from the hip with high-dose chemotherapy, it does not insure improved survival. Sure, there's evidence that the more chemotherapy you give, the more cancer cells you're going to kill. But that doesn't mean you're going to cure the patient, because it's very difficult to totally eradicate cancer once it is in some recurrent form. Cancer cells are impervious to drugs at given times in the cell cycle and, unlike normal cells, have an innate drug resistance, or rapidly acquire it because of their genetic instability.

At a 1995 oncology conference, a summary review of HDC results to date was presented, citing a number of small studies done over the prior decade, which seemed to indicate the importance of patient selection in determining success, and citing a few long-term survivors as possible evidence of efficacy.

Subsequent studies of HDCT in patients with Stage IV breast cancer were designed to maximize the response with an doxorubicin-based induction regimen prior to high-dose consolidation. Several published studies obtained similar results, i.e., 15-20 percent progression-free survival at greater than 2 years. Whether remission induction prior to HDCT improves disease-free survival remains to be determined in prospective randomized trials. It is unclear whether there are specific subsets of Stage IV patients more likely to benefit from HDCT than others. The most promising area of study in breast cancer is in patients with high-risk primary disease. Phase II data for patients with greater than 10 axillary lymph nodes shows 64 percent disease-free survival at 5 years.¹⁴

Published in 1996, such a meta-analysis was done by the World Health Organization affiliate ECRI, comparing 49 uncontrolled studies, involving 1,017 metastatic breast cancer patients treated with HDC, with 35 studies of 4,889 patients with similar characteristics treated with standard-dose chemotherapy regimens. This constitutes the most comprehensive review of the available data on HDC until that point.

The ECRI meta-analysis came to a number of striking conclusions. According to this study, the initial higher response rate to HDC appears to have little or no effect on disease progression and longevity, and may instead be related to favorable treatment selection, since chemo-insensitive patients were routinely screened out of HDC studies. While some subgroups may indeed do better with HDC, there is no way of identifying these patients for sure, and thus protecting other patients from the significant toxicity and mortality of the treatment. Most important, published studies actually appeared to show higher and longer disease-free and overall survival rates for standard-dose chemotherapies. Even in the case of the one randomized South African HDC trial mentioned above, ECRI lists seven published trials where survival was equal or better with standard-dose therapies.¹⁵

In early 1998, an extensive review of the medical literature of HDC for breast cancer appeared in the February edition of the Journal of the National Cancer Institute. This review article's excellent bibliography culls out the important research articles from the hundreds that have been published to date, and would be valuable for this alone even if it did not also offer other important insights. The physicians who wrote this review, JoAnne Zujewski, Anita Nelson and Jeffrey Abrams, came to many of the same conclusions that ECRI had. Existing studies, they found, showed:

The median survival (with HDC) is similar to that of historic controls, and a small percentage of persons remain disease-free three to five years after therapy. It is this small percentage of persons (the "tail on the curve") who remain disease-free that has led to the enthusiasm for this procedure.

The authors estimated that 65 percent to 75 percent of patients eligible for conventional-dose chemotherapy programs would not be candidates for HDC/ASCR programs. This rigorous selection process would be expected to identify a subgroup of patients with a better prognosis. Indeed, in this analysis, patients potentially eligible for HDC/ASCR did have higher overall response rates, higher complete response rates, and a median response rate that was 65 percent longer than patients treated with the same doxorubicin-containing regimen in conventional doses.

Despite the frequency with which this procedure is performed, the role of HDC/ASCR in the treatment of breast cancer remains undefined. Given the limitations of available data, it is somewhat surprising that thousands of women have undergone HDC/ASCR for the treatment of breast cancer. Perhaps physicians are not as familiar with the limitations of the data as one might presume.¹⁷

High dose therapy is associated with substantial cost and acute toxic effects, but also has potentially irreversible long-term effects. Until the benefit of this therapy is substantiated by large-scale Phase III trials, high-dose chemotherapy should not be used in the adjuvant treatment of breat cancer, apart from in randomized studies. ¹⁸

Taking a chance on life: How people decide

How do we "know" anything we do will save our life? I don't think we do. We gather as much information as possible and make a "leap of faith" and hope/pray we made the right decision that will be beneficial for us. I have learned there are no right answers that apply to all of us and although we all have breast cancer, it is still very much an individual disease and the responsibility for how we attack it is very much an individual decision. The bottom line: I have to do what I decide is best for me with no guarantees of the outcome.

A 1995 mail survey by the Soper Research firm, jointly sponsored by the National Alliance of Breast Cancer Organizations, Y-Me Breast Cancer Organization of Chicago and the Susan G. Komen Foundation, asked 1,500 women with metastatic breast cancer about their treatment choices. Of the 256 women who responded, over half said that it was they, not their doctors, who took the lead in selecting treatment. More than three quarters said that side effects and quality-of-life issues were far less important than tumor response to treatment. And nearly half felt that the main encouragement of chemotherapy was the preservation of hope. "This came as a surprise to many of us, who expected some desire for balance between aggressive therapy and quality of life," said Michelle Melin, Director of Patient Services for Y-ME. "But we found many women willing to pursue very aggressive therapy continuously until there were no more options." ²⁰

It is obvious that both doctors and patients pay attention to anecdotal information along the way, even though, as everyone knows, your second cousin Mabel's friend's case is of no statistical value in predicting your own treatment outcome. If you know someone with metastatic breast cancer in long-term remission following HDC, this is likely to color your decision. Conversely, if someone you know has died or been disabled from the treatment, this is bound to make you wary. Dr. John Winberg, of the Foundation for Informed Medical Decision-Making, puts it this way:

There is a lot of raw information out there that simply is almost all case reports of individual patients, and in the epidemiologic literature case reports get the lowest grade, they do not have a balanced statistical evaluation.... So the idea basically is to inform the patient in detail about the and at the same time to make it clear that the decision ultimately depends on the patient's own view of the situation, the patient's own preferences. There is no single right answer which the doctor can prescribe.

Examining the way people make treatment decisions, and even the nature of hope itself, may shed some light on why people decide as they do and how you can find your way to your own best decision. Sound medical research is one important basis for our decisions, but it is far from the only factor we take into account when making our choices. Cancer researchers, physicians and patients often have radically different perspectives, as the two studies cited above suggest. Michael Lerner, director of Commonweal, a California health and environmental research institute, and cofounder of Commonweal's Cancer Help program, has been studying medical decision-making his whole professional life, and discusses it at length in the preface of his book Choices in Healing:

Cancer researchers, like all scientists, often do their work best by a constant process of doubting whether promising results from a new study are actually correct or not. That healthy process of doubt leads them to check and recheck every study. They have nothing to lose and everything to gain by living in a research culture that emphasizes the primacy of doubt. Their goal is to contribute to the formulation of lasting true statements about the biomedical nature and treatment of cancer.

People with cancer are fundamentally in a different situation. To begin with, the time perspective of cancer patients is different. They are more interested than cancer researchers in treatment possibilities that offer some hope during the time defined by their particular disease. ²¹

Reflections on treatment choices

When all was said and done, most of the people I interviewed felt they had made the best decisions for themselves, at the time--whatever their choices had been, and whatever the outcome. Over and over again, they emphasized the importance of the following factors:

• Getting all the relevant information.

• Understanding the treatment goals and process as fully as possible.

• Considering the risks and benefits of treatment in relation to the possible outcomes, including a full awareness of potential side effects.

• Gathering other medical opinions.

• Talking with other patients, and spouse or partner.

• Developing a sense of real trust in the treatment team, particularly in the primary oncologist.

• Then turning inward to make the best decision they could.

Monica Driver, a high-risk primary breast cancer patient, at first agreed to HDC, and cited the reasons for her choice:

Factors that influenced my decision? The notion of "hit it hard before it becomes resistant" made sense to me (some old biologist-type training there) and to my husband. My husband and I agreed with Susan Love's notion that a research protocol can be a good way to get treatment. The local MDs were enthusiastic about the particular study I was being offered. Obviously, much of this was personal and specific to our own situation. But that's how I/we decided.

For a long time the most pressing argument for going forward with HDC, other than to stay alive for my family, was to psychologically avoid any "What ifs" or "If onlys" should cancer return. I could comfortably say, "Well, I did everything I could to lick the beast and it was just not meant to be." This does make some sense, but it seems a backdoor means of making a decision.

Do I do the practical, expected thing and try to possibly prolong my life via HDC while both risking long-term side effects and giving up a number of months for recovery, or do I kick over the traces and live to the fullest now while I feel physically able to do so? She (the psychiatrist) described this as living with joie de vivre. I have always been the practical caregiver type, thinking of everyone before myself. Now that I have accepted the fact that my life may not be open-ended, I feel like kicking over the traces and really letting my hair down (that doesn't mean a whole lot as I only have half an inch to let down, but you know what I mean). She did not help with the decision, but I felt better for having discussed it and for being understood. It was also the first time that I had admitted, even to myself, to a basically selfish desire to live fully in what time I have left. I think if I were younger, had young children, or felt sicker, this would be an easier decision. I don't look forward to the HDC/SCT itself, but that is not what holds me back. It is the loss of time and the possible long-term quality-of-life problems. When I read about others who go through HDC/SCT and then have recurrences so soon afterwards, I falter.

It is hard to buck the tide, go against the advice of multiple doctors, and to decide something which "might" shorten your life. The doctors even attempt to lay guilt trips on you. When I told the first oncologist that I was hesitating (she strongly advised HDC/SCT), she said, "Well, if you could see the rapidity with which your cells are dividing you wouldn't hesitate for a minute." She said this in front of my husband, which added to the pressure on me because then he wanted me to do the HDC and I felt guilty not to be treated more aggressively for "his" sake. This whole thing is horrible. Doctors at BMT centers spend hours with you, often 3 to 4 hours with more than one doctor at a time--where else would a doctor spend so much time with you? It can only mean that they want and need you in their unit.

If I had not had to shop around for someone who would treat me off study, I might have been swept into HDC after 4 rounds of CA and not had time to explore not only my options, but my own heart.

One thing I think you should know, and that is that the opposite decision can be made out of love also. Out of love you can decide not to fight further. Everyone is different, and clinging to the last vestige of life is not always right. You are not a hero just because you fight against all odds. Don't for a minute think that if you decide not to go forward with the most aggressive treatment that you are any less a hero.

I've read the theories, opinions, thoughts and feelings about amount versus success. I'm not comfortable with the less may be better attitude. I'm too scared to say more is better....I defer to the doc and Barb's wishes. She's my love, but it's her life. I guess this comes down to Barb's wish to do the most she can while healthy enough to make it through. I have my concerns with all the long-term possibilities, including...what if nothing is done? She has put her head down and said, let's give it hell. I'll continue to pass the info and support her through whatever she decides to do.

For those that question the cost and success of this.... Don't you realize without focus there is no hope? Without hope, what's next? Does someone like Barb wait and take her chances that she'll be here if this is proven years from now? What else can her decision be based on but hope? The desire to live...

Hope is something that anyone can have whatever the choice. It isn't limited to those who have HDC. Hope can always be a part of our lives because it isn't dependent on statistics at all. It is a state of mind entirely independent of one's condition in life. And if you need focus you only need know that there are always a residual few who end up doing well despite a grim prognosis. There are always the unusual cases to focus on whether they are taken as spontaneous remissions, miracles or whatever. They can serve us all as life-jackets so we don't sink into an ocean of depression.

I know a number of women who choose standard intensive therapies and there is no difference between their being hopeful and those who did HDC being hopeful. Both know they're playing at a game table where they don't control the spin of the wheel and time alone will show the results.

Hope is not a matter of rationality. It is a matter of inner affirmation of a future where survival and health remains one possibility--however remote--until death closes the door to all possibilities except itself.

The decision whether or not to have high-dose is a very personal one that only the person involved, with the help of his or her family, can make. There are many difficult aspects to this decision. First, do I want to take the risk of possibly dying from the treatment? Second, what is the possible benefit of this procedure? In some cases it is not known yet what the long-term benefits will be. Third, which chemo regimen might be most effective? Fourth, if I decide to do this, where should I do it? Where are the survival numbers the best? Fifth, what are the long-term side effects and am I willing to accept them?

For some women, high-dose is not the right choice. They may not have tumors that respond well to chemo or they may be too uncomfortable with the risks of such aggressive treatment. I believe it is an immensely personal choice that has to be made carefully and under no pressure from either the treating physician or the patient's family. I can only relate my own experience. When faced with a very poor prognosis that no one disputed, I chose high-dose because I had two young children. If I died during the procedure I wanted them to know that I had done what felt right to me. I do have permanent side effects of nerve damage to my hands and feet and my white blood cell count remains very low. I will never have the energy I used to have, and still have other lingering effects as well. My own personal belief was that the "big guns" were right for me but may not be so for everyone. Like anything else in life, one has to weigh the potential positives and negatives, explore all options, be as informed as possible and then make the decision.

Through all of this there have been a lot of woulda, shoulda, coulda's...those will drive you crazy. I have gone through all of the stages of denial, acceptance, anger...fear, etc. What I have tried to do is investigate my alternatives, choose treatment, place faith in my judgment, my doctors and God, and then turn it over to them! I try to never look back and rethink once I have chosen my path. I aggressively fight the disease and any kind of "acting sick." Even when I am in a "down" period...I am convinced that all is going well...only looking back do I see how weak I was.

I asked Mary if she'd rather bunt and maximize her chance of getting on first base or swing hard and try and knock one out of the park knowing that increased her risk of striking out. She didn't even hesitate before saying knock one out of the park.

I am still here three years later--not cancer-free, mind you (it did return within the year after my second transplant), but I am still here and that is what is important to me. The BMT bought me time--time to see my son reach sixteen this year, time for my grandson to get a little older to attempt to understand illness and death, and time for my three-year-old granddaughter to know I exist. Others might say that my BMT was not successful because of the cancer returning but they are wrong! Every procedure that I undertake is a success to me by virtue that I am still alive. But please keep in mind that this is my personal experience and not everyone has the same experience. I had heard of the good stories and of the bad stories--I could only pray that mine fell somewhere in the middle and, to my surprise, it was better than I had hoped.

Everyone wants to think they are taking an aggressive approach to cancer and that they can handle it. Ginger's had four surgeries, extensive radiation, several different chemo regimens, a HDC/SCR and is about to have some more radiation. The treatments have certainly been brutal and difficult. The cancer continues. Is it possible to overtreat cancer? Looking back, the answer for me is yes.

We don't need to be fighting harder; we need to be fighting smarter. After our twenty-five-year and $37 billion "war" on cancer we have: 1) 13 percent increase in cancer incidence, 2) 7 percent increase in death rate, and 3) the five-year survival is virtually unchanged. I still contend that we can't leave the research to the isolated medical community which has a proven failure record. It is time for new paradigms, starting with multi-disciplinary research teams.

At diagnosis in early December 1993, I was told that the five-year survival rate for women with inflammatory breast cancer was 50 percent. However, my doctors also stressed at that time that with aggressive treatment and with the strides in medical research and care, I could hope to beat those odds.

So my hope was to get five or more years of life. The head of the Bone Marrow Transplant Unit at the hospital was adamant that I not view the ABMT as a cure, but rather as a chance for a longer life. That was perfectly acceptable to me. No one promised me the moon.

Do I think the HDC/ABMT was worth it? I don't know. I just needed to do the most reasonable thing at the time, with as much intelligence as I could muster. It seemed like the best thing they had to offer. A few people on the list have flown through the process with far more grace and panache than me. My experience would be better described as an angry, awkward, profane brawl, or blind shadow-boxing.

Would I do it again? Yes. In retrospect, I wish that I had spent a couple of weeks prior to the experience creating peace inside myself.

For what it's worth, a year out--Mr. Nasty seems to be gone, or hiding well.

My husband got a call from a friend of his from the past today who had heard about my mets to the lungs. He told Jack that his wife had a breast removed recently, had one treatment of chemo, lost her hair, and was sick and said, "No more." Went to another doctor who said she did not need any more chemo. It might kill any cancer cells, and it might not. She might get mets and she might not. And if she took chemo, she still might get mets. So she went back to work and is doing fine. I guess he wanted to talk with Jack to prove that yes, you could get mets even if you took chemo (as I did) the first time around. He quoted scripture about "the time to die," etc. Jack told him we believe that, too, but Jo (me) was a fighter and wanted to do everything she could to fight this thing, and he was with me 100 percent. It was the first time that Jack had talked at length with anyone about this and I was proud of him, and pleased that he supported my decision when talking to his friend. Jack told him that it was good that he (the friend) supported his wife's decision, just as Jack did mine. "After all, it is their life and their decision."

Because of my recurrence I have sometimes regretted not trying harder to take tamoxifen three years ago--I have a history of migraine headaches and the tamoxifen caused them to quadruple in intensity. Thinking back, I know now that I made the right decision for me at the time. I don't want to spend the rest of my life worrying rather than living.

Something I'd like to add. Many breast cancer patients feel pressured from family and friends, as well as themselves, to choose the most aggressive treatment. Often they don't really know what it is like to go through those treatments, nor do they understand the difference in outcomes (in many cases, negligible). I guess it's another situation where we must know ourselves and be true to ourselves. Make the decisions for our own reasons and derive comfort in knowing that we've chosen what is best for us.

Notes

1. Belkora, Jeff. "Top ten decision lessons from CHBP Open Houses." http://www-med.Stanford.EDU:80/CBHP/
   Practical/Belkora.html.

2. National Cancer Institute. "High-Dose Chemotherapy with Stem Cell Transplant as Breast Cancer Treatment," from Cancer Facts, National Institutes of Health.

3. Antman, Karen H., et al., "High-Dose Chemotherapy with Autologous Hematopoietic Stem-Cell Support for Breast Cancer in North America." Journal of Clinical Oncology 15 (1996): 2197-05.

4. Zujewski, J., A. Nelson, and J. Abrams. "Much Ado About Not...Enough Data: High-Dose Chemotherapy with Autologous Stem Cell Rescue for Breast Cancer." Journal of the Natl Cancer Institute, 90 (1998): 200-09.

5. Zones, Jane. "Autologous bone marrow transplant: what is the price of hope?" National Women's Health Network The Network News 20, no. 6 (1995): 6.

6. Antman, et al., Op. Cit.

7. Ibid.

8. "Breast Cancer (Therapy) Chemotherapy with Autologous Bone-Marrow Transplant Re-Evaluated." Cancer Biotechnology Weekly (1996).

9. Burrus, William M., "Current treatment of advanced breast cancer." OT, (Jan.): 31.

10. Hortobagyi, Gabriel N., "Management of breast cancer: Status and future trends." Seminars on Oncology 22, no. 5 (1995): 103.

11. Greenberg, P., and G. Hortobagyi,et al., "Ten-Year Results of FAC Adjuvant Chemotherapy Trial in breast Cancer." Journal of Clinical Oncology 14 (1996).

12. Hirshaut, Yashar, and Peter Pressman. Breast Cancer: The Complete Guide New York: Bantam, 1996.

13. Bezwoda, W. R., "High-dose chemotherapy with hematopoietic rescue as a primary treatment for metastatic breast cancer: a randomized trial." The Journal of Clinical Oncology (1995): 2483-89.

14. Bearman, S. I., "High-dose chemotherapy for metastatic and primary breast cancer." Perspectives in Breast Cancer (1995): 28-9.

15. High-Dose Chemotherapy with Bone Marrow Transplant for Metastatic Breast Cancer: ECRI Patient Reference Guide, 2nd ed. Available at http://www.hslc.org/emb/bc1.html.

16. Hortobagyi, G. N., "Is High-dose Chemotherapy an Established Treatment for Breast Cancer?" ASCO Educational Book (1995): 341-46.

17. Zujewski, JoAnne, et al., Op. Cit.

18. Rodenhuis, S., et al., "Randomized trial of high-dose chemotherapy and haemopoietic progenitor-cell support in operable breast cancer with extensive axillary lymph-node involvement." Lancet 352 (1998): 515-21.

19. Slevin, M. L., et al. "Attitudes to chemotherapy: comparing views of patients with cancer with those of doctors, nurses, and general public." British Medical Journal 300, no. 6737 (1990): 1458-60.

20. "Most patients seek aggressive therapy." The Press-Enterprise (1996): D01.

21. Lerner, Michael. Choices in Healing Cambridge, MA: MIT Press, 1994.