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Weis_9780307460226_3p_all_r1.qxp:Layout 1 F u l l y U p d a t e d 10/6/09 9:34 AM S e c o n d Page iii E d i t i o n Living Well Beyond Breast Cancer A Survivor’s Guide for When Treatment Ends and the Rest of Your Life Begins Marisa C. Weiss, M.D. Ellen Weiss PDF Weis_9780307460226_3p_all_r1.qxp:Layout 1 10/6/09 9:34 AM Page iv This book cannot and must not replace hands-on medical care or the specific advice of your doctor. Use it instead to help you ask the right questions, make the right choices, and work more closely with your doctor and other members of your health care team. Copyright © 1997, 1998, 2010 by Marisa C. Weiss and Ellen T. F. Weiss All rights reserved. Published in the United States by Three Rivers Press, an imprint of the Crown Publishing Group, a division of Random House, Inc., New York. www.crownpublishing.com Three Rivers Press and the Tugboat design are registered trademarks of Random House, Inc. Previous editions of this work have been published as Living Beyond Breast Cancer by Times Books, a division of Random House, Inc., New York, in 1997, and by Three Rivers Press, an imprint of the Crown Publishing Group, a division of Random House, Inc., New York, in 1998. Library of Congress Cataloging-in-Publication Data Weiss, Marisa C. [Living beyond breast cancer] Living well beyond breast cancer : a survivor’s guide for when treatment ends and the rest of your life begins/Marisa C. Weiss, Ellen Weiss.—Fully updated 2nd ed. p. cm. Originally published: Living beyond breast cancer. New York : Times Books, 1997. Includes index. 1. Breast—Cancer—Popular works. 2. Breast—Cancer—Psychological aspects. 3. Adjustment (Psychology) I. Weiss, Ellen. II. Title. RC280.B8W396 2010 616.99'449 — dc22 2009020648 ISBN 978-0-307-46022-6 Printed in the United States of America Design by Meryl Sussman Levavi 10 9 8 7 6 5 4 3 2 1 Revised Edition www.ThreeRiversPress.cm To purchase a copy of Living Well Beyond Breast Cancer visit one of these online retailers: www.ThreeRiversPress.cm Weis_9780307460226_3p_all_r1.qxp:Layout 1 10/6/09 9:34 AM Page vii G Contents Acknowledgments ix Introduction: Living Well Beyond Breast Cancer xi PART ONE Treatment Over, On with Your Life 1. Over, Not Over 3 2. Support: Building a Network 15 PART TWO Additional Care Beyond Treatment 3. You and Your Doctors: Continuing Care 33 4. You and Other Health Care Professionals: Allied Care Team 63 5. Tests: Peer, Poke, Prod 76 6. After Mastectomy: Re-creating a Breast—With or Without Surgery 109 7. Ongoing Therapy: Hormonal, Herceptin, and Other Treatments 141 PART THREE Coping with Side Effects of Treatment 8. Fatigue and Loss of Energy 163 9. Understanding and Controlling Pain 173 10. Swelling (Lymphedema), Stiffness, and Skin Changes: Prevention and Management 205 11. Hair Loss and Nail Changes: Terrible but Temporary 230 www.ThreeRiversPress.cm Weis_9780307460226_3p_all_r1.qxp:Layout 1 viii • 10/6/09 9:34 AM Page viii Contents 12. Bone Health: Weaknesses and Strengths 247 13. Thinking and Remembering: Clearing the Fog and Sharpening Your Mind 268 14. Menopause and Growing Older: Hot and Cold, Wet and Dry 285 PART FOUR Caring for Your New Self 15. Sleep: Restoration and Renewal 315 16. Your Immune System: Blows and Boosts 329 17. Sustenance: Nutrition and Supplements 338 18. Weight and Exercise: Gains and Losses 358 19. Intimacy, Sex, and Your Love Life 380 20. A Child in Your Future: Fertility, Pregnancy, Adoption 399 PART FIVE Preventing and Managing Recurrence 21. Reducing the Risk of Breast Cancer 425 22. Recurrence: If Cancer Comes Back 443 23. Endings: Comfort, Closure, and the Circle of Life 459 Conclusion: Through Crisis Comes Opportunity Index www.ThreeRiversPress.cm 481 487 Weis_9780307460226_3p_all_r1.qxp:Layout 1 10/6/09 9:34 AM Page ix G Acknowledgments e are deeply grateful to the many individuals who infused our book with their extra special blend of expertise, wisdom, spirit, humor, warmth, and compassion. The principal editor of our book, Lindsay Orman, was a pleasure to work with and did an absolutely amazing job. The care and attention and intelligence she brought to her task was beyond anything we could have imagined, or anything other writers we know have experienced. Emily Timberlake guided the book to its launching with thoughtful dedication. So many voices are heard in this book: the people who shared their stories with us, the patients and their families Marisa has had the privilege of taking care of, and those who have shared our mission. Each person has contributed in a most personal way—eagerly or reluctantly, expansively or cautiously—with honesty and courage and verve—moved by the desire to help others. The book would have fallen flat without the voices of these many good friends. (Most of their names have been changed to protect their privacy.) We want to acknowledge the diligence, dedication, and unflagging spirit of these many friends—it’s impossible to thank them enough. We have also had help from a generous and distinguished group of professionals, and we want to thank them for their invaluable contributions: Zonera Ali, Robert Allen, Jayne Antonowsky, Rachael Brandt, Irene Card, Ned Carp, Carol Cherry, Robin Ciocca, Jan Clark, Martha Denckla, Dianne Dunkelman, Beth DuPree, Brenda Eastham, Barbara Fowble, Kevin Fox, Patricia Ganz, Paul Gilman, Robert Goodman, Generosa Grana, Jennifer Griggs, Barbara Hoffman, Clifford Hudis, Carole Kaplan, Harvey Karp, Rosalind Kleban, Anton Kris, Maria LoTempio, Geralyn Lucas, Cynthia Lufkin, Christina Meyers, Kathy Miller, Lillian Nail, Larry Norton, Kutluk Oktay, Steve Osborne, Edith Perez, Barbara Rabinowitz, Joan Ruderman, Andrea Rugh, Jennifer Sabol, David Sachs, W www.ThreeRiversPress.cm Weis_9780307460226_3p_all_r1.qxp:Layout 1 x • 10/6/09 9:34 AM Page x Acknowledgments Romayne Sachs, Andrew Saykin, Mitchell Schnall, Sandra Schnall, Helena Schotland, Leslie Schover, Lynn Schuchter, Joseph Serletti, Gloria Shattil, Lillie Shockney, Robert Smink, Alan Stolier, Margo Weishar, Beverly Whipple, Eric Winer, Anna K. Wolff, and Liza Wu. We are deeply grateful to our Breastcancer.org friends and Board of Directors: Ray Westphal, Amanda and Conrad Radcliffe, Jenifer and Jeff Westphal, Stevie Lucas, Lisa Kabnick and John McFadden, Peggy and Bruce Earle, Betty Moran, John Chappell, Barbara and Henry Jordan, Marjorie Findlay and Geoffrey Freeman, Sean Rooney, Barbara and Larry Cohen, Jill and Tom Nerney, Noreen Fraser, Patty and Gary Holloway, Aileen and Brian Roberts, Jerry Crowther, Glenn Crowther, Michael Hirschhorn, JoAnn and Joe Thomson, Roz and Chuck Epstein, Sallie and Charlie Grandi, Betty and Phil Harvey, Judy and Michael Mealey, Patty and Brian Holloway, Marge Tabankin, Richard and Maureen Yelovich, Jack Lynch, Elaine Thompson, Sarah Peterson, Erin Dugery, Kathy Schneider, Jessica Laufer, Denise and David Jordan, Sara Vance and Michelle Waddell, Fiona and Lee Yohannon, Lisa Petkun, Eleanor Davis, Shari Foos, Joanne Gillis-Donovan, Richy Glassberg, Sheri Lambert, Christopher Lyons, Jim Monastero, Susan Muck, Nina Montee-Karp, Larry Norton, Debbie and Sam Schwartz, and Hope Wohl. We want to extend a very special thanks to each member of our amazing Breastcancer.org and Lankenau Hospital teams, and to our friends from the Living Beyond Breast Cancer organization. Always there for support, advice, comfort, care, and feeding, our families patiently endured our neglect and absence as we worked away at this book. Thank you, Elias, Henry, Isabel, and David Friedman, and Leon Weiss—you who waited with such good grace till all this book business was finished and still remembered who we were. Plus a big thanks to our other family champions: Alice, Eve, Nathaniel, Philip, and Stephen Weiss, and Adele Friedman; Aaron, Daniel, Lena and Rob Walker; Cindy Kling; John, Ella and Owen Spencer; Lauren, Sara, and Livia Weiss; Sara Manny, Adam and Ethan Weiss. And we want to thank each other: for patience and good humor, for holding back and holding on, for drive, energy, and the right word. Close as we are, as mother and daughter, we have a new appreciation for each other’s depths and gifts. Marisa Weiss and Ellen Weiss www.ThreeRiversPress.cm Weis_9780307460226_3p_all_r1.qxp:Layout 1 10/6/09 9:34 AM Page xi G Introduction Living Well Be yond Breast Cancer ife has thrown you a curve: breast cancer. What do you do with that hit? There is only one you—you are unique, after all—and you have worked so hard to protect your life from the threats and challenges of this disease: subjecting yourself to all manner of tests, procedures, surgery, chemo, radiation, and hormonal therapy, as well as countless medications and then remedies to deal with side effects. You may not have known what was up, down, or coming round the next corner. But here you are: done! It’s now time to find your path through recovery to living well beyond breast cancer with the best information, solid guidance, new hope, and determination. Remember, the purpose of all that treatment, all your work, was to give you back your life: joy, fun, comfort, meaning, pleasure, security. And the main reason for writing this book is to help you reclaim, rebuild, and reenergize your life, understanding that you are not alone, as you may have feared. For sure, you are not alone. In the eleven years since the original publication of this book, the amount of medical information about breast cancer has more than doubled. Almost three million more Americans have joined the ranks of the three million already diagnosed with the disease—and major medical advances have given more and more of these people the chance to live well beyond breast cancer. To make the most of the latest and greatest, you need to be in the know, informed by your link to medical care—your primary care physician. Easier said than done when the average length of a doctor visit has shrunk to seven minutes! So what do you do? Turn to resources available in print, online, wherever. L www.ThreeRiversPress.cm Weis_9780307460226_3p_all_r1.qxp:Layout 1 xii • 10/6/09 9:34 AM Page xii Introduction I wrote this book—together with my mother, Ellen Weiss, a writer and breast cancer survivor—to give you the best medical information and guidance to help you live as long as possible with the best quality of life, and to reassure you that you are not alone. Each page will help you understand the challenges in your path and provide you with many ready-to-use practical solutions to speed your total recovery and reclaim your life. As a physician specializing in breast cancer for over twenty years, I have had the honor of taking care of thousands of women and men, and their families, facing breast cancer. It wasn’t long after I started practicing that I understood the high level of distress that my patients endured on completion of initial treatment. Rather than feeling thrilled to have the breast cancer experience behind them, they were uneasy, often anxious: What do I do now? Am I really cured? Is it safe for me to get pregnant? Can I take hormones? How do I get rid of extra weight? How do I manage the lingering side effects of treatment? How do I extinguish those horrible hot flashes? How can I stay asleep through the night? What should I tell the man I’ve just met? How do I deal with the fear of recurrence? What should I be eating, taking, and doing to reduce the risk of recurrence? Does my diagnosis put my daughter at risk? My patients desperately wanted an intelligent, indepth, reliable response to their questions as they moved from “I have breast cancer” ahead to “I am leading a normal life.” To provide the best answers to my patients and to countless others beyond the scope of my practice, I started the program Life After Breast Cancer at the University of Pennsylvania twenty-one years ago, then a year later the nonprofit organization Living Beyond Breast Cancer. Both are still thriving today. But to provide a 24/7 resource for medical information for people worldwide, we needed something more. So in 1999, I started the nonprofit organization Breastcancer.org and have worked tirelessly at making it the number one resource in the world for breast health and breast cancer information and the most visited online community for the exchange of personal experience and expertise. I am immensely proud of these absolutely indispensable organizations and all of the wonderful, talented, and dedicated people who run them. Nonetheless, I am most aware of the power and comfort that only comes from a book you can hold in your hand, in the intimacy of time and place. www.ThreeRiversPress.cm