00 3938-3 FM 8/29/00 12:06 PM Page i Living with Breast Cancer by Sharon Sorenson and Suzanne Metzger, D.B.A. Pearson USA, Inc. 201 West 103rd Street Indianapolis, IN 46290 A Pearson Education Company 00 3938-3 FM 8/29/00 12:06 PM Page ii Copyright © 2000 by Sharon Sorenson and Suzanne Metzger, D.B.A. All rights reserved. No part of this book shall be reproduced, stored in a retrieval sys- tem, or transmitted by any means, electronic, mechanical, photocopying, recording, or otherwise, without written permission from the publisher. No patent liability is as- sumed with respect to the use of the information contained herein. Although every precaution has been taken in the preparation of this book, the publisher and authors assume no responsibility for errors or omissions. Neither is any liability assumed for damages resulting from the use of information contained herein. For information, ad- dress Alpha Books, 201 West 103rd Street, Indianapolis, IN 46290. THE COMPLETE IDIOT’S GUIDE TO and Design are registered trademarks of Pearson Education, Inc. International Standard Book Number: 0-7865-3447-8 Library of Congress Catalog Card Number: Available upon request. 02 01 00 8 7 6 5 4 3 2 1 Interpretation of the printing code: The rightmost number of the first series of num- bers is the year of the book’s printing; the rightmost number of the second series of numbers is the number of the book’s printing. For example, a printing code of 00-1 shows that the first printing occurred in 2000. Printed in the United States of America Note: This publication contains the opinions and ideas of its authors. It is intended to provide helpful and informative material on the subject matter covered. It is sold with the understanding that the authors and publisher are not engaged in rendering profes- sional services in the book. If the reader requires personal assistance or advice, a com- petent professional should be consulted. The authors and publisher specifically disclaim any responsibility for any liability, loss, or risk, personal or otherwise, which is incurred as a consequence, directly or in- directly, of the use and application of any of the contents of this book. Making or distributing electronic copies of this book constitutes copyright infringement and could subject the infringer to criminal and civil liability 00 3938-3 FM 8/29/00 12:06 PM Page iii Publisher Marie Butler-Knight Product Manager Phil Kitchel Managing Editor Cari Luna Senior Acquisitions Editor Renee Wilmeth Development Editor Suzanne LeVert Senior Production Editor Christy Wagner Copy Editor Erica Rose Illustrator Jody P. Schaeffer Cover Designers Mike Freeland Kevin Spear Book Designers Scott Cook and Amy Adams of DesignLab Indexer Mary SeRine Layout/Proofreading Angela Calvert John Etchison 00 3938-3 FM 8/29/00 12:06 PM Page iv Contents at a Glance Part 1: The Big Shock: First Events 1 1 It Ain’t Gold in Them Hills 3 Learn how the first clues of breast cancer show up through breast self-exams, mammograms, and clinical exams, how a biopsy confirms what’s there, and how to prepare for a possible bad-news call. 2 We Need to Talk 13 Find out how, when, where, and with whom to share (or not share) the news of your diagnosis and gain some idea of what to expect from others, both warm and won- derful as well as puzzling or unfavorable responses. 3 Learning a New Vocabulary 27 Learn how to find your way through the maze of getting information from books, magazines, Web sites, and con- versations with those who have gone through the process before. 4 Taking Their Word for It 39 Discover how to choose your medical professionals, when to look elsewhere, and how to know when you should get a second—or third—opinion. 5 Decisions, Decisions, Decisions 51 Get the information you need to make the final decisions and to formulate a plan of action for dealing with insur- ance companies. 6 Call for a Working Plan 65 Learn about employment issues that may arise and, if you need it, where you can turn for help. Part 2: Shock Waves: Dealing with Treatment 73 7 Taking Your Lumps: Lumpectomy 75 Find out about the types of lumpectomies and what to expect during and after the related procedures. 8 When They Take It All: Mastectomy 87 Compare the kinds of mastectomies and their procedures from beginning to end, and get prepared for what you might expect when the bandages come off. 9 Between Surgery and the Rest 99 Tune in to what you should and shouldn’t do to prepare yourself for post-surgery treatments and/or follow-up procedures. 00 3938-3 FM 8/29/00 12:06 PM Page v 10 Chemotherapy: Cruel to Be Kind 111 Find out about the procedures before and during chemo- therapy and get an idea of what to expect on both the physical and mental fronts. 11 Radiation Therapy: Getting Nuked 127 Get a handle on the preparation, administration, and after-effects of radiation therapy and ways of making yourself more comfortable during and after treatment. 12 Hormone Therapy: The Pill 137 Learn about the issues connected with hormones and hormonal therapies, warnings for possible problems with and without therapies, and ways of dealing with them. Part 3: After Shock: Dealing with the Tremors 151 13 The Big Arm: Lymphedema 153 Explore the who, how, and why of lymphedema and, if you suffer from it, how therapists might treat it. 14 Again and Again: The Follow-Up 165 Get all the details about a plan for the rest of your life— the when, why, and what kind of follow-up you’ll need. 15 Caution Flag: Risk Factors 175 Check out the typical factors that make you at risk for breast cancer. 16 Emotional Turmoil: Diamond in the Rough 187 Learn about the range of emotions you experience from the initial diagnosis through the last treatment and beyond and how to turn negative feelings into positive ones. Part 4: Shock Absorbers: Finding Support 197 17 Groupies: Yea or Nay? 199 Find out how to acknowledge feelings of isolation and how support groups can help by validating your feelings and concerns. 18 Mind and Body: Spiritual Support 211 Examine the kinds of spiritual support you might find helpful, from meditation and prayer to inner strength and a positive attitude. 19 Support Tools 219 Take a look at the means of formal and informal support—books, tapes, chat rooms, Web sites, family and friends, and professionals—and learn how to figure out when they are or aren’t right for you. 00 3938-3 FM 8/29/00 12:06 PM Page vi 20 Easing Others’ Pain: Walking the Mile 231 Recognize those who need your support as much as you need theirs, and learn what you can do for them and where they can turn for help. Part 5: The Aftermath: Its Many Parts 241 21 Back to the Bikini: Reconstruction 243 Examine the major factors in deciding for or against reconstruction and compare the types of reconstruction now offered. 22 Boob in a Box: Prostheses 257 Find out if you might benefit from a prosthesis; learn about the kinds, shapes, and colors available; gain insight into being fitted; and get advice about what to do in the meantime. 23 Life Goes On: Physical and Emotional Changes 269 Take a look at the physical problems you might face after the completion of surgery and treatment and find ways of dealing with new priorities. 24 Fashion Fling: New Clothing Priorities 279 Learn about apparel for now and later and which fabrics and styles work best for comfort and function. 25 Recurrence: Safe to Go Back in the Water? 291 Get the details about local and distant recurrences, their likelihood, diagnosis, and treatment. 26 Facing Death: Day to Day 301 Read personal advice from those who are facing death, those who beat the odds, and those who have lost loved ones. 27 Volunteers and Advocates: Working for the Cause 313 Explore ways volunteers can support, campaign for, and participate in medical, governmental, and community breast cancer–related activities. Appendixes A Glossary 327 B Further Readings 335 C Support Groups 339 D Sources of Prostheses and Post-Surgical Clothing 343 E Informational Web Sites 351 Index 355 00 3938-3 FM 8/29/00 12:06 PM Page vii Contents Part 1: The Big Shock: First Events 1 1 It Ain’t Gold in Them Hills 3 Breast Cancer: The Big Picture ......................................................3 What It Means—Then and Now ..................................................4 First Clues: Yours and Theirs ........................................................5 Peas and Marbles: Finding a Lump ................................................5 Using the Eagle Eye ......................................................................6 Get the Picture: Mammograms ....................................................6 Dreaded Word: Irregular ................................................................8 It’s Biopsy, Not Autopsy ................................................................9 Core Needle—to the Heart of the Matter ........................................9 Surgical Snip-Snip ........................................................................10 It’s Not the Avon Lady Calling ....................................................10 Getting Psyched ..........................................................................10 Now You Know: Tears and Fears ..................................................11 2 We Need to Talk 13 Things Are Going to Be Different ..............................................13 What’s Good for the Goose … ....................................................14 Finding the Words and Voice ......................................................14 Get Ready for the 180 Degrees ....................................................15 First Things First ........................................................................16 Speak Up and Speak Out ............................................................17 First Love: Telling Your Partner ..................................................17 Family Matters: Telling the Kids ................................................19 Age Matters ................................................................................19 Gender Bender ............................................................................21 Folk Tales: Telling Your Parents ..................................................21 Heart to Heart: Telling Your Friends ..........................................22 A Tear to the Eye ........................................................................23 A Final Word to the Wise ............................................................24 3 Learning a New Vocabulary 27 The Doctor’s Word ......................................................................27 Survivor’s Notebook ....................................................................28 Tell-All Diagnosis ........................................................................28 All the World’s a Stage ................................................................29 Hotlines: Who You Gonna Call? ................................................30 Read All About It! ........................................................................32 Stacks and Stacks at the Library ..................................................32 Timely if You Have the Time ......................................................33 00 3938-3 FM 8/29/00 12:06 PM Page viii The Complete Idiot’s Guide to Living with Breast Cancer Bookstore Shelves ........................................................................34 Books from Dot Com ..................................................................34 Web Site Browsing ......................................................................34 And the Survivors Say … ............................................................36 4 Taking Their Word for It 39 Dr. Who? ....................................................................................40 Say What? Trust and Tact ............................................................41 Certificates on the Wall ..............................................................41 They’ve Seen It All ......................................................................42 No Dale Carnegie Flunk-Outs ......................................................42 And the Winner Is … ..................................................................44 Second—and Third—Opinions ..................................................44 When? ........................................................................................45 Who? ..........................................................................................46 Survivors’ Advice ........................................................................47 Take It or Leave It ........................................................................49 5 Decisions, Decisions, Decisions 51 Who, What, When, and Where ..................................................52 Recommendation, Please ..............................................................52 Standard or Not? ........................................................................53 Clinical Trials: Innocent or Guilty ................................................57 Insurance: Your Personal KGB ....................................................58 Complementary Combos ............................................................60 Mind over Matter ........................................................................61 Take Your Vitamins (and Herbs), Dear ........................................62 Oldest Medicine of All ................................................................62 The Final Choice: Yours ..............................................................63 The Question, Please ..................................................................63 Learn the Lingo ..........................................................................63 The Envelope, Please ....................................................................63 6 Call for a Working Plan 65 What the Law Says ......................................................................66 I Am Woman, I Am Strong! ........................................................66 Working Through It ....................................................................67 Do I Want to Stay Here? ............................................................68 The Sick Day Option ..................................................................69 Letting Others In ........................................................................69 Protecting Yourself at Work ........................................................70 Becoming a Semi-Legal Eagle ......................................................71 viii 00 3938-3 FM 8/29/00 12:06 PM Page ix Contents Part 2: Shock Waves: Dealing with Treatment 73 7 Taking Your Lumps: Lumpectomy 75 They’re Gonna Do What? ..........................................................76 Surgical Biopsy ............................................................................76 Partial Mastectomy ......................................................................77 Lumpectomy ................................................................................77 Minus One Golf Ball ..................................................................78 Recipe for the Routine ................................................................79 First Things First ........................................................................80 Getting Wired ..............................................................................80 Getting Prepped ..........................................................................80 Getting Exorcised ........................................................................81 How Much Ouch? ......................................................................82 Going Topless: What’s Ahead? ....................................................83 Getting the Word ........................................................................84 The Long Haul ............................................................................84 8 When They Take It All: Mastectomy 87 Names and Their Faces ................................................................88 It’s All Procedure: Yours ..............................................................90 Pass Your Tests ............................................................................90 The Personal File ........................................................................92 Routine Rigors ............................................................................92 Ten, Nine, Eight, Seven … ..........................................................93 When You Awake: What to Expect ............................................94 On the Home Front ....................................................................95 The Great Unveiling ....................................................................97 9 Between Surgery and the Rest 99 The Little Things That Count ....................................................99 Non-Arm Arm: No Meds Here, Please ........................................100 Yes, We Have No Razors ............................................................101 The Path from Pathology ..........................................................101 Positive Margins ........................................................................102 Positive Lymph Nodes ................................................................102 In Situ, No; Invasive, Yes ..........................................................103 Hormone Receptors Receiving? ....................................................103 Second Opinion? ........................................................................104 Before More, Heal! ....................................................................105 Exercise: Back to the Range ......................................................105 Port—or Starboard? ..................................................................107 Things Your Mother Never Told You ........................................108 ix