2199 LISTEN TO THE PATIENT “. . . his patients should be his book, they will never mislead him.” Paracelsus, 1493–1541 Book of Tartaric Diseases For more than 50 years, Cancer has been devoted to exploring every facet of malignant neoplasia, from morphology to therapy, from epidemiology to biology, from historical perspective to basic science. One aspect, however, needs emphasis, namely, the human being who bears the burden of the cancer. For this reason and with the encouragement of the Editor, we have undertaken to remedy this situation by directing attention to the fears and frustrations, hopes and expectations, and feelings and thoughts of all kinds of the person who has cancer, who is worried about it, and who is dependent wholly on physicians specialized in its diagnosis and management. For doctors to be understanding of the very deep needs of patients with cancer, it is requisite that they be privy to authentic, but often unspoken, expressions of a patient’s anxieties about physical and emotional pain, loss of control over personal destiny, and plain dread of dying and, with that, the end of cherished relationships. The essay that follows is by a patient with cancer who also is a physician. It is the first in what is hoped will be a series of pieces in this journal that will provide insight into the innermost feelings and reflections of patients with cancer, the purpose being to enable those who are charged with care of them to be able to care better; to care, more empathically. We hope that those who read these lines and these essays will encourage patients to contribute something of benefit to this series. Barrie R. Cassileth, Ph.D. Department of Integrative Medicine Memorial Sloan Kettering Cancer Center New York, New York A. Bernard Ackerman, M.D. Ackerman Academy of Dermatopathology New York, New York Cancer 2000;88: 2199 –200. © 2000 American Cancer Society. Exposure Ruth H. Lerman, M.D. Henry Ford Health System, Division of Geriatrics, Detroit, Michigan. M The author wishes to thank Barrie R. Cassileth, Ph.D., and Rachel Remen, M.D., for their kind assistance and her beloved husband, Mark Sinkoff, M.D., for everything. Address for reprints: Ruth H. Lerman, M.D., 5095 Far Ravine Court, West Bloomfield, MI 48323. Received February 24, 2000; accepted February 24, 2000. © 2000 American Cancer Society y first breast carcinoma was diagnosed at age 38 years. My risk factors were minimal and I had numerous “protective” factors. Nonetheless, my internist-husband perceived a subtle change and mammography demonstrated branching calcifications in the suspicious area. Biopsy revealed a 2-mm, high grade, invasive carcinoma surrounded by several small foci of ductal carcinoma in situ (DCIS). Sections of tissue from the mastectomy specimen contained two small foci of DCIS, but sections from the lymph nodes showed no metastasis. There was no further treatment. I knew that the 5-year “cure” was arbitrary, but I still had planned to celebrate when I reached it. Instead, I was diagnosed with a colloid carcinoma, clearly a second primary tumor, in the notably thin, postmastectomy skin flaps 5 years to the month after the first tumor was diagnosed. That news came 2 weeks after my father’s funeral. As I made the rounds of many consultants, I longed for someone to say “This is sad. It isn’t fair. It shouldn’t have happened.” I reflected on the first patient I ever cared for. I admitted him on the 2200 CANCER May 15, 2000 / Volume 88 / Number 10 first day of my first rotation as a third-year medical student. He was 6 years old. His parents were loving and very concerned. I liked all three of them and was eager to help. In a few days the diagnosis of a Stage IV neuroblastoma was made. I was not there when the parents were told. They asked that I see them as soon as I returned to the floor. My sense of panic was palpable as the nurse escorted me to the consultation room. “What can I do for them? What questions can I answer that the attending did not or could not?” Their need for comfort and support was communicated through tearstained faces as I sat down. “I’m so sorry,” I stammered and then I wept with them. My tears conveyed my sadness at their son’s fate. It would have been even better to share with them my feelings that his illness was unjust, that it should not have happened. Years of practice in internal medicine/geriatrics have now passed. I’ve cared for many patients whose burden seemed more than they should have to bear, but it took my own personal history to heighten a sense of tragedy. My own experience with my disease revealed to me that I needed my physician to share my sadness and acknowledge the injustice. My husband has been struck by the number of men who wait with partners, a spouse, or another in the reception room of physicians who care for patients with breast carcinoma. The very presence of these men, their demeanor, and the tone of each couple’s conversation conveyed that they perceived correctly the seriousness of the situation, not one that is necessarily insurmountable or incurable, but nonetheless very sad. In an oncology practice, virtually every face in the waiting room, every name on the schedule, represents a family that is suffering. In the months prior to the diagnosis of my second carcinoma, I had begun using a focused pause, a deep breath, or a prayer before entering the examination room of my seriously ill patients. This helped me reconnect with the sadness and injustice of their illness. It also helped me transfer my focus from grieving over my father’s imminent death to caring properly for my patients. In contrast to this increasing recognition of both the needs of my patients and my own, most of my medical training had encouraged me to adopt a persona of invulnerability in dealing with these all too many daily connections with tragedy. Even as a patient, I was challenged to maintain that invulnerability. One example of this challenge is particularly poignant to me. My breasts and I were invited to attend Tumor Board, along with my husband because he was a member of the “doctor club.” While wearing a gown, I saw tissue sections of my carcinoma projected and heard the discussion about my diagnosis, treatment, and prognosis. Two surgeons examined me as I kept my back to the rest of the group. Uninvited, I clarified my own goals for treatment before any of the physicians’ opinions were offered. Breasts, husband, and I were asked to leave the room to permit uninhibited deliberations to take place. I accepted the offer to attend that session because it was a rare opportunity to draw on the intellect of a renowned group of experts. By attending personally, by speaking up, and by being examined, I could be certain that their opinions were based, at least in part, on my own reality and not on some misconception. As a physician-patient I thereby was privy to more information and had greater authority for my care than the usual patient. Afterward I wanted more than intellectual expertise. I needed a physician to say, “That must have been difficult. You conducted yourself well.” Or it might have been helpful just to hear an expert physician express uncertainty by saying, “I don’t know if I could have done that.” Throughout my travels to offices of physicians and to hospitals because of my disease, I have met several physicians who through their words and manner came across to me as unassuming and understanding. They enabled me to express my fears and overcome psychologic issues surrounding my disease and the treatment of it. They encouraged me to be human, to take time off from work for my overall well-being, rather than to tacitly encourage the facade of maintaining an invulnerable physician persona at all costs. Although I found something of value in every contact I had with physicians during my visits, the encounters I treasure most are the ones in which physicians in the room, as I had, exposed themselves as the vulnerable human beings that we are.