September is Ovarian Cancer Awareness Month, and we are especially mindful of the sobering statics related to this disease: more than 20,000 women in the United States are diagnosed with ovarian cancer each year, and approximately 15,000 women die annually from the disease. Later this month, JHU Press is very proud to be publishing the second edition of A Guide to Survivorship for Women Who Have Ovarian Cancer, edited by Robert E. Bristow, MD, MBA, FACOG, FACS, Terri L. Cornelison, MD, PhD, FACOG, and F. J. Montz, MD, KM, FACOG, FACS. Today on the Blog, we excerpt the book’s introduction by the late Dr. Montz—a powerful, humane essay retained from the first edition, a lasting testament to his career and character.
Introduction: Essential Concepts
by F. J. Montz, MD, KM, FACOG, FACS
Survivorship
Numerous philosophers have spent numerous hours discussing the “life well lived.” Most of them would agree that the well-lived life is full of love, experiences, sharing, meaningful relationships, accomplishments, and giving to others. As we all progress along this journey, our attempts to live the “well-lived life” are threatened by different forces, both internal (for example, disease) and external (for example, social pressures) to ourselves. Ovarian cancer is only one of many such threats to the life well lived. The sense of betrayal by one’s own body, the strain on relationships, and the physical toll that the disease and its treatments may inflict are some of the challenges that ovarian cancer presents to living life well. Yet it is the deliberate and conscious choice to live life well that allows us to truly survive as we navigate the uncertainties of human life. That is what this book is about: survivorship in the face of, in spite of, and through ovarian cancer.
What do we mean by survivorship? Of course, part of survivorship is just that: outliving the disease and being around long enough to live out one’s natural life expectancy and die of something else. Do you have to be totally free of ovarian cancer to be a survivor? Absolutely not. Does being totally free of any viable cancer cell constitute survivorship? An equally forceful “No.” Many women die from their ovarian cancer within a relatively short span of years or months, but they survive the experience, being mentally, emotionally, and, within certain limits, physically intact. Similarly, we have had numerous patients who have survived the disease, strictly speaking, but whose lives have been in shambles in all other respects. One woman, the one who actually dies from her cancer, is a survivor; the other, the one who lives many years or even decades “disease-free,” isn’t. What makes the difference? The difference is in being in control as much as possible; being as “well,” in all aspects of wellness, as is possible; and finding joy and pleasure in ever having had a life well lived. Our mission, therefore, must be not to avoid death but to live life.
The Reality of Ovarian Cancer
Ovarian cancer can be viewed as three separate diseases. For some women, mainly those with early-stage disease and about 30 percent of women with advanced-stage disease, ovarian cancer is treated once and for all with an aggressive combination of surgery and chemotherapy. The disease is diagnosed, is treated, goes away, and never comes back. Unfortunately, for a small but significant second group of women, the initial treatments fail, and the time from diagnosis to death is short—only months or little more than a year.
For most women, however, ovarian cancer is a chronic disease, one that is treated and goes into remission for a while and then returns, is retreated, goes back into remission, and so on. Eventually, perhaps years or decades from the time of initial diagnosis, the patient will succumb to the disease or to complications of its treatment. With this in mind, a greater emphasis is naturally placed on “what happens along the way,” and the decisions made during these years or decades are enormously important.
Self-Determination
As we emphasize repeatedly in this book, we firmly believe that the patient must be informed, as much as possible and as much as she desires, about the disease and about the treatment options and their side effects and outcomes. We are unshakably committed to patient self-determination. For a woman to determine what she wants, however, she must know what the choices are and what the results of such choices are. It is our obligation, as health care providers, to meet our patients “where they are,” to help them to prioritize their wishes and desires, and to develop individualized goals and agendas, while presenting them with the information they need to make decisions about what they do or don’t want. Only after all these events have occurred can the well-informed patient have true self-determination.
Quality of Life
Another concept we repeatedly focus on in this book is that of quality of life, often abbreviated as QOL. Simply defined, quality of life is how well a person feels about everything she is and everything that makes up her universe. It includes measurable factors such as the amount of pain or physical discomfort she is experiencing, but it is much, much more than that. Emotional, psychological, sexual, spiritual factors—all of them difficult to measure—are part of QOL.
For many of our patients, the nausea, loss of hair, and pain cause less suffering than do certain fears about the future: what is going to happen to the patient’s three-year-old daughter, her frail life partner for whom she is the primary caregiver, or her own soul. Issues of quality of life must be addressed daily, if not minute by minute, when making decisions regarding treatments and other interventions. Many women are willing to trade a marked deterioration in their measurable QOL for a significant chance of a cure or a meaningful prolonging of life; few are willing to do the same for only a few additional months or weeks. Unfortunately, patients often are not informed that they have choices or that QOL can play a role in decision making. We believe that quality-of-life issues are the most important issues our patients face in exercising self-determination. One of our primary goals in our medical practice and in this book is to empower women to wrestle with these issues.
Robert E. Bristow, MD, MBA, FACOG, FACS, is the director of Gynecologic Oncology Services, the Philip J. DiSaia Chair of Gynecologic Oncology, Chief of the Division of Gynecologic Oncology, and a professor of obstetrics and gynecology at the University of California–Irvine. He is the coauthor of Surgery for Ovarian Cancer: Principles and Practice. Terri L. Cornelison, MD, PhD, FACOG, is the associate director for clinical research in the Office of Research on Women’s Health at the National Institutes of Health and an assistant professor of gynecology and obstetrics at the Johns Hopkins University School of Medicine. F. J. Montz, MD, KM, FACOG, FACS, was a professor of gynecology and obstetrics, surgery, and oncology at the Johns Hopkins Hospital and Medical Institutions.
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