Colon & Rectal Cancer A Comprehensive Guide for Patients & Families By Lorraine Johnston 1st Edition December 1999 (est). 1-56592-633-1, Order Number: 6331 500 pages (est.), $24.95 (est.)

Preface

In the face of fear, you've chosen to educate yourself about colorectal cancer and its treatments--a courageous and positive approach to moving past a dreadful event. This book will help you do so.

By enabling you to build a frame of reference from sound, current medical information, we'll help you understand the decision-making process needed to make appropriate choices about your medical care.

There's a great deal of promising information we can share with you about colorectal cancer, ranging through information about evaluating and choosing treatments; ways to locate and track new treatments being developed; preparatory information about tests and procedures; survivor experiences with keeping or losing friends; perspectives on handling employers, insurance companies, and the Social Security Administration; and so on. Did you know, for example, that you can find information about the dosage, mode of action, and side effects of medications being recommended for your treatment? That charitable groups exist expressly to fly you and your family, free of charge, to a distant cancer center where you might plan to be treated? And that if you're being treated away from home, the American Cancer Society's Hope Lodge network can provide you and your loved ones with rooms free of charge?

Sources of information

The chief resources used in developing this book were the journals and texts of Western medicine, which are summarized and presented to you in language understandable by those without a medical background. Appendix A, Resources, discusses references that can be accessed using a computer and the Internet, such as the National Cancer Institute's grand-daddy of all cancer information databases, and Medline, the National Library of Medicine's database of more than 9 million published medical research papers.

This book cannot substitute for up-to-date oncology training and good medical care. You should always consult with specialists in colorectal cancer before making decisions about your care.

Several chapters that are of interest to all cancer survivors, such as the chapters on stress, traveling for care, and clinical trials, were reused from my first book about lymphoma with appropriate changes made for colorectal cancer survivors.

Many colorectal cancer survivors generously volunteered to tell of their experiences with diagnosis, surgery, chemotherapy, radiotherapy, employment, and financial issues, and the emotional flotsam that might accompany any of these. Their words are included throughout the text, and serve as an anchor to reality and an inspiration for the rest of us.

Who should read this book?

If you were diagnosed recently, this book can help you understand what tests and treatments you'll encounter in the following months. We also discuss the emotional aspects of each experience: the shock and isolation of diagnosis and the reactions that follow, the fear of upcoming treatments, and the anxiety associated with waiting to see if treatment is successful.

If you are a long-term survivor of colorectal cancer, we provide the information you need to make sense of the possible long-term physical and emotional consequences of disease and treatment that you may be experiencing, such as dealing with an ostomy or with continued fatigue, as well as the information that some of you may need concerning recurrence of disease and its treatment.

If you're a caretaker of someone with colorectal cancer, the collective and pragmatic wisdom in this guide will enable you to make the most of your caretaking and advocacy efforts. It will assist you in relaxing and staying healthy so that you can best care for your loved one, both emotionally and instrumentally. We can help you understand and respond appropriately to the reactions of your loved one and yourself to the unique stressors that a cancer diagnosis entails.

Who should not read this book?

If you have not yet obtained a firm diagnosis of colorectal cancer, please do not read this guide until your doctors have clarified your circumstances. Symptoms that mimic colorectal cancer such as rectal bleeding are attributable to several other disorders. You should seek appropriate treatment for these conditions from a qualified physician.

If you have other cancers such as intestinal lymphoma, carcinoid tumors, sarcoma, anal cancers such as basal, squamous, or epidermoid carcinoma, anorectal melanoma, or malignancies of the gastrointestinal tract other than colorectal cancer, this book contains information that is not correct for your circumstances.

If you need detailed information about screening for colorectal cancer, see the American Cancer Society's 1999 book Colorectal Cancer: A Thorough and Compassionate Resource for Patients and Their Families. We have included a page in the back of this book that summarizes screening information. You might wish to photocopy and share this page with family and friends.

How to read this book

We've organized this book carefully to make the best use of what might be the prioritized time and energy of colorectal cancer survivors and those who look after them. The format of this book follows the path of your experience with colorectal cancer: symptoms, testing and diagnosis, surgery and hospitalization, treatment, long-term effects, and so on. We try to provide you with digestible amounts of information that you'll need at each stage of awareness and treatment. In fact, you might do well to consider reading only the chapters that are meaningful to you at a given point in order to avoid information overload. We believe that this method of organization will enable you to locate the information you need most in a timely manner.

A chapter is devoted to stress and its sometimes surprising effects on the immune system. We offer a variety of ways to cope with stress, and insights into making challenging experiences work in your favor. Moreover, in appropriate chapters, we discuss the impact of stress at that stage, and its possible effect on your well-being.

A glossary of medical terms related to colorectal cancer is included. Many general resources are provided in the appendixes.

Particular care has been taken to create a truly useful index. We suggest checking the index in order to locate a topic of your interest that appears not to be addressed by chapter subheadings.

You might find it upsetting to read about treatment options that don't apply to your situation, or to read ahead about the possibility of recurrence or disease progression. Don't feel that you have to read about everything all at once. Not all parts of this book will apply to you. Read only what will be helpful to you at a given stage.

Finally, we encourage you to mix humorous readings and other lighthearted distractions with your serious readings and considerations.

The author and contributors

My family has had several annealing experiences with cancer, including lymphoma, gastric cancers, and colorectal cancers. I have a degree in life sciences, but none of my scientific training prepared me to cope with cancer in my family. I hope I can help you feel better by sharing information about colorectal cancer, and, most significantly, by empowering you to find even more information.

The compelling voices in this resource guide are the many survivors of colo-rectal cancer, from those treated for local disease with colonoscopic surgery, to those who are long-term survivors of multiple surgeries, chemotherapy, and radiotherapy. The distillation of their experiences is intended to help you know what to expect in advance, to know where to find the best information for your circumstances, and to know that you are not alone.

Some of our contributors have used their real names, but some, in order to preserve their privacy, have chosen aliases or have used first names only. The italicized portions of the text are their thoughts, their feelings, their wisdom, their own words.

Acknowledgments

My first and greatest thanks go to my husband Larry, who is my role model for cancer survivors. His fortitude, determination, rollicking sense of humor, uncompromising sense of integrity, selflessness, and intelligence are an unending inspiration to me. In the year it took to write this book, he overlooked dust bunnies as large as our cats and ate many carry-out meals.

Special thanks are offered to Betty C., Chris Davies, Denise Suhrie, Max Holstein, Jeanne O'Neill, JouAnn, Kathy W., Lorraine, Linda Smith, Marsha S. Center, RDH, Myra, Nan Suhadolc, MSW, LCSW, Paul "Still Breathing" Lusczynski, Pat Behymer, Pete Potter, Peter, Pati, Randall White, Richard S., Susan E., Sue L. Browne (author of a book of cancer success stories), Dixie T., and to my other contributors who wish to remain anonymous. These brave people trusted me with their deep feelings and confidential experiences so that others will have an easier time facing the unknown. I've carefully preserved their words as offered. The genuineness and spontaneity of their thoughts and feelings communicate to the reader in ways I cannot. Several of them also agreed to review this text in advance, offering a fresh eye and valuable first-person insights that I'd have missed.

My heart aches as I thank the family of Shelly Weiler, who passed away in February 1999 when this book was being written. Shelly's family generously consented to my using his words at a time when many other families would have considered my asking an intrusion. He taught the rest of us how to live with cancer: with humor, intelligence, spirit, and with great honesty and integrity. Shelly's story is interwoven throughout this book, and he is greatly missed.

To Susan E. and to a certain family who wishes to remain anonymous, both of whom lost loved ones to colorectal cancer, I extend my most humble thanks and sorrow. You allowed me to probe painful memories much too soon after devastating losses. Please take some measure of comfort in knowing that we won't forget your loved ones, and that others will learn from your experiences.

To Bill Glenning, who runs the ACOR colon cancer discussion group on the Internet, I offer thanks and congratulations for being a tough long-term colorectal cancer survivor, and for keeping a firm but very loving hand on the tiller of our group. I thank Gilles Frydman for sponsoring all of the ACOR discussion groups.

My editor, Linda Lamb, continues to offer unerring guidance regarding the material cancer survivors will need to sustain them on their life journey. Her patience and tact, her flawless perspective, her willingness to log countless hours reviewing my work to ensure that answers are provided for cancer survivors are truly priceless. Working with her is a joy.

Carol Wenmoth, editorial assistant, is a beacon on the writer's horizon. Her experience in publishing benefits writer and reader alike. Carol oversees the complexity of a book's creation with ease; she shares her expertise kindly and willingly; her memory for detail is phenomenal. She made writing this book easy for me, and I thank her.

Medical reviewers

Several specialists reviewed the chapters of this book that are medically intense. If this book is a useful guide, it is so because of their efforts.

In daily life and in the medical literature, medical experts do not always agree. Not surprisingly, some of our medical reviewers disagreed on certain parts of this book. When a consensus of opinion was clear, I included the agreed-upon facts; when not, I stated that differences of opinion exist on a given topic. Every effort was made to clarify obscure topics and provide correct and current information. Any errors that remain in this book are mine.

I thank Costas Giannakennas, MD, of the University of Patras, Greece, for his very thorough medical review of the chapters on modes of treatment, side effects, and late effects, and for fielding my many questions. In the years since my husband's diagnosis and treatment, Dr. Giannakennas has been kindly, tactfully, and consistently ready to help me understand medical issues surrounding cancer. I could not ask for a better mentor.

Charles A. Padgett, MD, a medical oncologist at Good Samaritan Hospital in Baltimore, Maryland, reviewed the chapter on modes of treatment, answered my many questions on this and numerous other medical topics, and has in general been our lifeline since my husband's illness in 1990. He typifies the doctor that all of us hope to have at our worst moments: a person of high medical and personal standards, of goodwill and gentleness, possessed of a sturdy sense of humor.

Paul Ian Tartter, MD, FACS, associate professor of surgery and chief of breast surgery at Mount Sinai School of Medicine, New York, kindly reviewed the chapter on prognosis, offering his corrections and suggestions.

I thank Jill D. Brensinger, MS, genetics counselor at the Johns Hopkins Hereditary Colorectal Cancer Registry, who reviewed Chapter 3, in which risk factors for colorectal cancer and the familial colorectal cancer syndromes are discussed. Ms. Brensinger's good eye and sound background in cancer genetics serve the reader in good stead.

Asnat Groutz, MD, of the Department of Obstetrics and Gynecology, Lis Maternity Hospital, Sackler Faculty of Medicine, Tel Aviv University, Israel reviewed Chapter 18, Sexuality, Fertility, and Pregnancy. Dr. Groutz, who is doing a fellowship with Jerry Blaivas, MD, FACS, Clinical Professor of Surgery at Cornell University Medical College, offered corrections, insights, and suggestions that are very much appreciated.

Several delightful, tactful, and extraordinarily generous medical doctors reviewed the chapter on modes of treatment and, in some cases, discussed issues with me by phone. Their insights, corrections, and suggestions are beyond measure. They are:

Kirby Bland, MD
J. Murray Beardsley Professor and Chairman
Department of Surgery
Brown University School of Medicine
Providence, Rhode Island

Dennis Devereux, MD
Mid-Hudson Valley Center
Poughkeepsie, New York

Garner P. Johnson, MD, FACS
Assistant Professor of Surgery
Albany Medical College
Albany, New York

Mohammed Mohiuddin, MD
Professor and Chairman
Department of Radiation Medicine
University of Kentucky
Lexington, Kentucky

James Muchmore, MD
Associate Professor, Surgery
Tulane University Medical Center Hospital
New Orleans, Louisiana

Stephen S. Schild, MD
Assistant Professor of Oncology
Mayo Medical School
Rochester, Minnesota

Karen Seiter, MD
Associate Professor of Medicine
New York Medical College
Valhalla, New York

Raymond Staniunas, MD, FACS
Assistant Professor of Surgery
Case Western Reserve
Cleveland, Ohio

Timothy Yeatman, MD
Assistant Professor of Surgery
H. Lee Moffitt Cancer Center and Research Institute
University of Southern Florida
Tampa, Florida

I am especially grateful to those individuals who diligently reviewed the entire manuscript, offering many insights, suggestions, corrections, and copious explanations throughout. Their efforts were not only a great service to me, but a crucial service to readers.

In this second book, I again thank cancer researchers in the United States and elsewhere who, though often underpaid and unrecognized, have devoted their lives to caring about our well-being and our outcomes. Thanks to the effort and altruistic collaboration of cancer researchers all over the world, we are witnessing and benefiting from robust progress in the understanding and treatment of cancer.

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