Cancer Survivorship: Today and Tomorrow

316 Pages·2007·2.39 MB·English

by  Patricia A. Ganz M.D. (auth.)

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
ancer 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
Ctwo-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 Tomorrow is 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
v i i
Preface
t 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-
Itinguished 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.
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x preface
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.
Contents
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
x i
x i i contents
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