Cancer
Survivorship
Cancer
Survivorship
Today and Tomorrow
Patricia A. Ganz, M.D.
Editor
American Cancer Society Clinical Research Professor Division of Cancer Prevention and Control Research Jonsson Comprehensive Cancer Center
UCLA Schools of Public Health and Medicine Los Angeles, California, USA
Foreword by Sandra J. Horning, M.D.
Patricia A. Ganz, M.D.
American Cancer Society Research Professor Division of Cancer Prevention and Control Research Jonsson Comprehensive Cancer Center
UCLA Schools of Public Health and Medicine Los Angeles, CA 90095-6900
USA
Library of Congress Control Number: 2006925526 ISBN-10: 0-387-34349-0 e-ISBN-10: 0-387-68265-1 ISBN-13: 978-0-387-34349-5 e-ISBN-13: 978-0-387-68265-5 Printed on acid-free paper.
© 2007 Springer Science+Business Media, LLC
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I would like to dedicate this book to the founding members of the National Coalition for Cancer Survivorship (NCCS),
as well as to the many cancer patients and survivors who have taught us so much.
We have learned a lot about cancer survivorship, but there is much more to discover.
Foreword
vii
Cancer survivors have increased in number more than threefold over the last 30 years to the current level of 10 million and growing. Among patients diagnosed today, nearly two-thirds are expected to survive 5 or more years. This success may be attributed to the expertise of physicians and nurses from multiple disciplines, who precisely execute a complex plan based in clinical research. Yet, after a period of orchestrated and frequent inter- action with healthcare professionals, bolstered by the attention and encouragement of family and friends, the cancer patient may view the end of treatment with anxiety and concern. And, what exactly is the plan? Just as healthcare providers are expected to keep up-to-date with the latest in treatment and prevention, they must now coordinate and provide comprehensive sur- vivor care. This significant text, organized and edited by Patricia A. Ganz and involving the contributions of over 40 distinguished authors, provides a greatly needed resource for survivor care—today and tomorrow.
The current attention on cancer survivorship represents a confluence of burgeoning sur- vivor numbers, a corpus of data on late treatment effects in children and adults, and increased public and professional awareness. Dr. Ganz and many of the contributors to this comprehen- sive text pioneered cancer survivorship, and they must justifiably be proud that their advocacy and commitment to survivor care and research have resulted in in-depth reports by the Presi- dent’s Cancer Panel, several Institute of Medicine studies, and this timely text. Cancer Sur- vivorship: Today and Tomorrowis a natural evolution of these efforts, inclusive of the major areas of survivor care: surveillance for recurrence and second cancers, management of late effects, coordination of ongoing health maintenance and prevention, and the important psy- chosocial elements integral to the healing process after cancer treatment. Care of an entire gen- eration of cancer survivors is needed and will be facilitated by the organization of this volume according to specific diseases, patient groups, and crosscutting topics. Yet, as valuable and current as this text is, it makes patently clear that survivorship is ever changing as diagnosis and treatment evolve, and that much more research is needed to predict and preempt undesir- able late effects.
As a survivor, I appreciate the fog of a new cancer diagnosis, when the world is upended and the future uncertain. It is at this time that cancer patients need expert guidance for a per- sonalized approach to the least-complicated as well as the most-effective therapy. The inclu- sion of survivorship issues in training curricula and ongoing education of healthcare professionals, consideration of age and comorbidity in treatment planning, and prospective assembly of a multidisciplinary team to deliver both cancer and survivor care are necessary to accomplish this goal. As an oncologist and a cancer survivor, I recognize the need to coordi- nate care for the generations at risk for second cancers and other late complications and to make their health and social outcomes the subject of ongoing scientific inquiry.
The current era of molecular medicine brings hope that effective cancer treatments will be accompanied by fewer complications and greater success. It also presents the opportunity to incorporate survivorship research from the onset in clinical investigation, as we are now better able to understand the molecular basis of treatment complications as well as efficacy. All of these tools need to be brought to bear for the current generation of cancer survivors. This com- prehensive volume brings us up-to-date with cancer survivorship for the moment and sets the stage for future developments. Congratulations go to the editor and the 42 contributing col- leagues for this valued text.
Sandra J. Horning, M.D.
Professor of Medicine
Department of Medicine/Oncology Stanford University Medical Center Stanford, California, USA
It was almost 30 years ago that I began my training in hematology/oncology. I had a special interest in the emerging field of medical oncology. While hematology had a long and dis- tinguished history as a subspecialty focus in medicine, oncology care had been primarily the domain of surgeons and radiotherapists, with a limited role for internists. Having spent my undergraduate years working in various cardiology research laboratories, my sudden interest in cancer medicine must have surprised those around me. Myocardial infarction was a common killer of men in their early fifties, and it was not unusual to have patients admitted to the hos- pital with irreversible brain damage after a full cardiac arrest in the field. I was discouraged that my patients with advanced cardiovascular disease had little therapy that could control their pain and symptoms, and that it was difficult to talk with them openly about the seriousness of their diagnosis and prognosis. Little did I know that major developments in understanding the mechanisms of atherosclerosis, along with important advances in preventive treatments, would lead to the dramatic decline in cardiovascular disease we see today.
In contrast, the patients whom I met on the oncology ward seemed more able to confront their diagnoses and to discuss the options for treatment that occasionally held the possibility of cure, sometimes disease control, and, at the minimum, palliation. Only about 35% of patients could expect to live for 5 years or more, but there was enormous excitement about new drug discoveries, the development of combination chemotherapy, and the emerging cures in patients with Hodgkin’s disease and childhood leukemia. Somehow, I thought that in my lifetime cancer would have a greater prospect for cure than cardiovascular disease. Well, I guess I might have made the wrong bet, not appreciating the complexity of the enemy called cancer, which represents more than 100 specific diseases with different etiologies and risk factors. Nev- ertheless, we have made great progress in the prevention, detection, and treatment of cancer during these past 3 decades. With these advances, we have seen the expansion of the number of cancer survivors and the recognition of the unique medical and psychosocial needs of this patient population.
During the past few years, there has been an increasing focus on the needs of the cancer- survivor population, with three Institute of Medicine reports providing detailed reviews of topics relevant to childhood and adult cancer survivors, as well as to the psychosocial needs of breast cancer survivors. Other recent reports by the President’s Cancer Panel and the Centers for Disease Control and Prevention highlight the plight of cancer survivors and how their needs are not being adequately met by the current healthcare system. Thus, a major goal of this volume is to provide a concise and focused resource for healthcare professionals. We describe the current state of knowledge regarding the medical and psychosocial issues related to cancer survivorship, which range from general (e.g., surveillance after primary therapy) to disease spe- cific (e.g., testicular, gynecological, prostate, breast, colorectal cancers). We also focus on topics that range from the late effects of cancer treatments to insurance, employment, and job dis- crimination. As the title of this book implies, this is the state of our knowledge today, as well as our hope for greater knowledge tomorrow, as further systematic research is conducted on the health outcomes of long-term cancer survivors.
Producing this volume has provided an opportunity for me to call upon many long-term friends and colleagues in the survivorship community, including Susan Leigh, who I first met in 1986 at the founding of the National Coalition for Cancer Survivorship (NCCS), and Pat Fobair, an early pioneer in the survivorship movement as the social worker in the radiation oncology department at Stanford University Medical Center. Barbara Hoffman, a young lawyer, who took up legal advocacy for cancer survivors, was another NCCS founder. I also met Ellen Stovall in the early 1990s when she took over the helm of the NCCS, which she is now leading into its twenty-first year. Others, such as Julia Rowland and Becky Silliman, have been my research colleagues in recent years, while the remaining authors are all individuals with whom I have worked or collaborated with in various ways. This volume comes from the shared expe- rience of having seen cancer-survivorship research and care emerge as a legitimate focus in medicine today.
Preface
ix
I would like to thank several people for their role in making this work possible: to my parents for their constant support of me throughout my childhood and as my professional career developed; to my husband and best friend, Tom, who, in spite of being a physician and labo- ratory scientist, seems to understand what I have been doing all of these years; and to my chil- dren, David and Rebecca, for their patience in listening to me talk about the challenges I faced in my work, as I tried to measure quality of life in cancer patients and gain acceptance for something that nobody seemed to appreciate at the time. Finally, I want to extend my thanks to Paula Callaghan, my editor at Springer, who recognized the importance of cancer survivor- ship as a twenty-first-century issue and made production of this volume a reality.
Patricia A. Ganz, M.D.
x p r e fac e
Foreword . . . . vii Preface . . . . ix Contributors . . . . xiii Chapter 1
Cancer Survivors: A Physician’s Perspective . . . . 1 Patricia A. Ganz
Chapter 2
Cancer Survivorship: A Nursing Perspective . . . . 8 Susan Leigh
Chapter 3
Oncology Social Work for Survivorship . . . . 14 Patricia Fobair
Chapter 4
Survivorship Research: Past, Present, and Future . . . . 28 Julia H. Rowland
Chapter 5
Surveillance after Primary Therapy . . . . 43 Craig C. Earle
Chapter 6
Late Effects of Cancer Treatments . . . . 54 Noreen M. Aziz
Chapter 7
Medical and Psychosocial Issues in Childhood Cancer Survivors . . . . 77 Smita Bhatia, Wendy Landier, Jacqueline Casillas, and Lonnie Zeltzer
Chapter 8
Medical and Psychosocial Issues in Hodgkin’s Disease Survivors . . . . 90 Jon Håvard Loge and Stein Kaasa
Chapter 9
Medical and Psychosocial Issues in Testicular Cancer Survivors . . . . 101 S.D. Fosså, L.B. Travis, and A.A. Dahl
Chapter 10
Medical and Psychosocial Issues in Gynecologic Cancer Survivors . . . . 114 Karen Basen-Engquist and Diane C. Bodurka
Chapter 11
Medical, Psychosocial, and Health-Related Quality of Life Issues in
Breast Cancer Survivors . . . . 122 Julie Lemieux, Louise J. Bordeleau, and Pamela J. Goodwin
Chapter 12
Medical and Psychosocial Issues in Prostate Cancer Survivors . . . . 145 Tracey L. Krupski and Mark S. Litwin
Chapter 13
Physical and Psychosocial Issues in Lung Cancer Survivors . . . . 157 Linda Sarna, Frederic W. Grannis, and Anne Coscarelli
Contents
xi
Chapter 14
Cancer Survivorship Issues in Colorectal Cancer . . . . 177 Clifford Y. Ko and Patricia A. Ganz
Chapter 15
Medical and Psychosocial Issues in Transplant Survivors . . . . 188 Karen L. Syrjala, Paul Martin, Joachim Deeg, and Michael Boeckh
Chapter 16
Cancer Survivorship Issues in Older Adults . . . . 215 Karim S. Malek and Rebecca A. Silliman
Chapter 17
Second Malignancies after Radiation Treatment and Chemotherapy for
Primary Cancers . . . . 225 Lydia B. Zablotska, Matthew J. Matasar, and Alfred I. Neugut
Chapter 18
Psychosocial Rehabilitation in Cancer Care . . . . 238 Richard P. McQuellon and Suzanne C. Danhauer
Chapter 19
Reproductive Complications and Sexual Dysfunction in
Cancer Survivors . . . . 251 Leslie R. Schover
Chapter 20
The Employment and Insurance Concerns of Cancer Survivors . . . . 272 Barbara Hoffman
Chapter 21
Cancer Advocacy . . . . 283 Ellen L. Stovall
Chapter 22
The Survivorship Care Plan: What, Why, How, and for Whom . . . . 287 Craig C. Earle, Deborah Schrag, Steven H. Woolf, and Patricia A. Ganz
Index . . . . 295
xii c o n t e n t s
Noreen M. Aziz, M.D., Ph.D., M.P.H.
Senior Program Director, Office of Cancer Survivorship, Division of Cancer Control and Population Science, National Cancer Institute, Rockville, Maryland, USA Karen Basen-Engquist, Ph.D., M.P.H.
Associate Professor, Department of Behavioral Science, The University of Texas at M.D. Anderson Cancer Center, Houston, Texas, USA
Smita Bhatia, M.D., M.P.H.
Director, Epidemiology and Outcomes Research, Department of Pediatric Oncology, City of Hope Cancer Center, Duarte, California, USA
Diane C. Bodurka, M.D.
Associate Professor, Department of Gynecological Oncology, The University of Texas at M.D. Anderson Cancer Center, Houston, Texas, USA
Michael Boeckh, M.D.
Assistant Member, Program in Infectious Diseases, Fred Hutchinson Cancer Research Center; and Assistant Professor of Medicine, University of Washington School of Medicine, Seattle, Washington, USA
Louise J. Bordeleau, M.D., F.R.C.P.(C.), M.Sc.
Attending, Department of Medical Oncology, Mount Sinai Hospital, Toronto, Ontario, Canada
Jacqueline Casillas, M.D., M.S.H.S.
Assistant Professor, Department of Pediatrics, Division of Hematology/Oncology, David Geffen School of Medicine at UCLA, Los Angeles, California, USA
Anne Coscarelli, Ph.D.
Research Psychologist, Department of Public Health; and Director, Ted Mann Family Resource Center, University of California–David Geffen School of Medicine, Los Angeles, California, USA
Alvin A. Dahl, M.D., Ph.D.
Professor, Department of Clinical Cancer Research, National Hospital–Radium Hospital, Oslo, Norway
Suzanne C. Danhauer, Ph.D.
Assistant Professor and Associate Director, Psychosocial Oncology and Cancer Patient Support Programs, Department of Internal Medicine, Wake Forest University Baptist Medical Center, Winston-Salem, North Carolina, USA
Joachim Deeg, M.D.
Member, Clinical Research Division, Fred Hutchinson Cancer Research Center; and Professor of Medicine, University of Washington School of Medicine, Seattle, Washington, USA
Craig C. Earle, M.D., M.Sc., F.R.C.P.C.
Associate Professor of Medicine, Department of Medical Oncology, Dana–Farber Cancer Institute, Harvard Medical School, Boston, Massachusetts, USA
Patricia Fobair, L.C.S.W.
Clinical Social Worker and Group Therapist, Supportive Program, Cancer Center, Stanford University Hospital, Stanford, California, USA
Contributors
xiii
Sophie D. Fosså, Ph.D.
Professor, Department of Long-Term Studies, National Hospital–Radium Hospital, University of Oslo, Oslo, Norway
Patricia A. Ganz, M.D.
Director, Division of Cancer Prevention and Control Research, Jonsson Comprehen- sive Cancer Center at UCLA; and Professor, Schools of Public Health and Medicine, University of California, Los Angeles, California, USA
Pamela J. Goodwin, M.D., M.Sc., F.B.P.C.
Professor, Department of Medicine, University of Toronto; and Senior Scientist, Samuel Lunenfeld Research Institute, Mount Sinai Hospital, Toronto, Ontario, Canada
Frederic W. Grannis, Jr., M.D.
Assistant Professor, Department of Thoracic Surgery, City of Hope National Medical Center, Duarte, California, USA
Barbara Hoffman, J.D.
Founding Chair, National Coalition for Cancer Survivorship, Rutgers University School of Law, Newark, New Jersey, USA
Stein Kaasa, M.D., Ph.D.
Professor, Department of Cancer Research and Molecular Medicine, Faculty of Medicine, The Norwegian University of Science and Technology and the Palliative Care Unit, St. Olavs Hospital, Trondheim, Norway
Clifford Y. Ko, M.D.
Associate Professor, Department of Surgery, UCLA School of Medicine–West Los Angeles VA Medical Center, Los Angeles, California, USA
Tracey L. Krupski, M.D.
Assistant Professor, Department of Urology, Dale University Medical School, Durham, North Carolina, USA
Wendy Landier, R.N., M.S.N., C.P.N.P.
Pediatric Nurse Practitioner, Division of Pediatrics, City of Hope Comprehensive Cancer Center, Duarte, California, USA
Susan Leigh, B.S.N., R.N.
Cancer Survivorship Consultant, Tucson, Arizona, USA Julie Lemieux, M.D.
Attending, Department of Medicine, Mount Sinai Hospital, Toronto, Ontario, Canada Mark S. Litwin, M.D., M.P.H.
Professor, Department of Urology and Health Services, David Geffen School of Medicine, School of Public Health, Jonsson Comprehensive Cancer Center, University of California, Los Angeles, California, USA
Jon Håvard Loge, M.D., Ph.D.
Professor, Department of Behavioral Sciences in Medicine, University of Oslo and the Centre for Palliative Medicine, Ulleval University Hospital, Oslo, Norway
Karim S. Malek, M.D.
Assistant Professor, Department of Medicine, Section of Hematology and Oncology, Boston University School of Medicine, Boston, Massachusetts, USA
Paul Martin, M.D.
Member, Clinical Research Division, Fred Hutchinson Cancer Research Center; and Professor, Department of Medicine, University of Washington School of Medicine, Seattle, Washington, USA
xiv c o n t r i b u t o r s
Matthew J. Matasar, M.D.
Instructor, Department of Medicine, Columbia University Medical Center, New York, New York, USA
Richard P. McQuellon, Ph.D.
Associate Professor and Director, Psychosocial Oncology and Cancer Patient Support Programs, Wake Forest University Health Sciences, Winston-Salem, North Carolina, USA
Alfred I. Neugut, M.D., Ph.D.
Professor, Department of Epidemiology, Mailman School of Public Health; and Department of Medicine, Herbert Irving Comprehensive Cancer Center, College of Physicians and Surgeons, Columbia University Medical Center, New York, New York, USA
Julia H. Rowland, Ph.D.
Director, Office of Cancer Survivorship, Division of Cancer Control and Population Science, National Cancer Institute, Bethesda, Maryland, USA
Linda Sarna, R.N., D.N.Sc., F.A.A.N.
Professor, School of Nursing, University of California, Los Angeles, Los Angeles, California, USA
Leslie R. Schover, Ph.D.
Professor, Department of Behavioral Science, University of Texas, M.D. Anderson Cancer Center, Houston, Texas, USA
Deborah Schrag, M.D.
Memorial Sloan-Kettering Cancer Center, New York, New York, USA Rebecca A. Silliman, M.D., Ph.D.
Professor, Department of Medicine and Public Health; and Chief, Section of Geriatrics, Boston University School of Medicine, Boston Medical Center, Boston, Massachusetts, USA
Ellen L. Stovall
President and CEO, National Coalition for Cancer Survivorship, Silver Spring, Maryland, USA
Karen L. Syrjala, Ph.D.
Associate Member, Clinical Research Division, Fred Hutchinson Cancer Research Center, Associate Professor of Psychiatry and Behavioral Sciences, University of Washington School of Medicine, Seattle, Washington, USA
L.B. Travis
Senior Investigator, National Institutes of Health, Department of Health and Human Services, Division of Cancer Epidemiology and Genetics, National Cancer Institute, Bethesda, Maryland, USA
Steven H. Woolf, M.D., M.P.H.
Departments of Family Medicine, Epidemiology, and Community Health, Virginia Commonwealth University, Richmond, Virginia, USA
Lydia B. Zablotska, M.D., Ph.D.
Assistant Professor, Department of Epidemiology, Mailman School of Public Health, Columbia University, New York, New York, USA
Lonnie Zeltzer, M.D.
Professor, Departments of Pediatrics, Anesthesiology, Psychiatry and Biobehavioral Sciences; Director, Pediatric Pain Program, David Geffen School of Medicine at UCLA; Associate Director, Patients and Survivors Program, Division of Cancer Prevention and Control Research; and UCLA Jonsson Comprehensive Cancer Center, Los Angeles, California, USA
c o n t r i b u t o r s xv
