Living Beyond Breast Cancer: A Survivor's Guide for When Treatment Ends and the Rest of Your Life Begins

Living Beyond Breast Cancer: A Survivor's Guide for When Treatment Ends and the Rest of Your Life Begins

by Marisa Weiss, Ellen Weiss

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"How can I know if I'm really cured?"
"Will anyone ever be attracted to me again?"
"Will I ever get to enjoy sex again?"
"It is safe for me to get pregnant?"
"How do I live well beyond menopause without estrogen replacement therapy?"
"What do I tell my boss?"
"My daughter wants to


"How can I know if I'm really cured?"
"Will anyone ever be attracted to me again?"
"Will I ever get to enjoy sex again?"
"It is safe for me to get pregnant?"
"How do I live well beyond menopause without estrogen replacement therapy?"
"What do I tell my boss?"
"My daughter wants to know if she's going to get breast cancer too.  What should I tell her?"

If you are one of the 2.6 million women in the U.S. living beyond breast cancer, these may be some of the questions troubling you.  You've been through diagnosis and treatment; now you're ready to move from "I have breast cancer" back to "I am leading a normal life."  Living Beyond Breast Cancer will help you understand and manage the tough issues you face as you go on beyond treatment, and well into the future.

You'll learn how to become as healthy as possible for as long as possible by eating right, managing your weight, and finding an exercise program  that works with your lifestyle.  You'll find out what to do if you've got to stop taking hormones or want to start.  You may also need advice on achieving intimacy and having a baby.  You'll also find invaluable guidance on growing older and navigating troubling symptoms of menopause, particularly when they're brought on by chemotherapy or tamoxifen or by stopping hormone replacement therapy.  A normal life includes dealing with job and health care issues and wills. So you'll find in-depth information on these subjects too.

You're a survivor, and you've got a future.  This empathetic book, filled with comprehensive medical information, practical advice, and the voices of survivors who have lived through everything you're going through, will help you celebrate your second chance at living beyond breast cancer.

From the Trade Paperback edition.

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Table of Contents


Introduction: Living Beyond Breast Cancer        

Part One: Treatment Over, On with Your Life        
1. Over, Not Over        
2. Support Groups        

Part Two: Additional Care Beyond Treatment                
3. You and Your Doctors: Continuing Care                
4. You and Other Health Professionals                
5. Tests: Peer, Poke, Prod                                
6. After Mastectomy: Re-creating a Breast--With or Without Surgery                        
7. Tamoxifen Therapy: Is It for You?                

Part Three: Coping with Lingering Side Effects of Treatment        
8. Fatigue and Loss of Energy                                
9. Hair Loss: Terrible but Temporary                        
10. Arm Lymphedema: Prevention and Management                
11. Other Lingering Side Effects of Treatment                

Part Four: Caring For Your New Self                                
12. Intimacy, Sex, and Your Love Life                        
13. Eating Right for Recovery and Beyond                        
14. Weight Control                                                
15. Boosting Your Immune System                                
16. Breast and Chest Wall Self-Examination                        
17. A Child in Your Future? Fertility, Pregnancy, Adoption        
18. Menopause and Growing Older                                
19. Alternative and Complementary Therapies                

Part Five: The Threat Of Recurrence                        
20. Can You Live Cancer Free?                        
21. Recurrence: When Cancer Comes Back                
22. Living with and Managing Metastatic Cancer        
23. Understanding and Controlling Pain                
24. Hospice                                                
25. Endings                                                

Part Six: Employment, Insurance, And Wills        
26. Job Issues and Health Insurance                        
27. Wills for Living and the End of Life                

Part Seven: Hope On The Horizon                        
28. Understanding the Breast Cancer Genes                
29. New Treatment Breakthroughs in Sight                
30. Don't Let Breast Cancer Define You                
31. Conclusion: Turning "Why Me?" into "Why Anybody?"                                        

Appendix: Arm and Shoulder Exercises                

Helpful Organizations                                        

Selected Readings                                        

Living Beyond Breast CancerSM Membership Form        



Living Beyond Breast Cancer

Over 2 million women in the United States are living with breast cancer. One in eight women is at risk. Each year, over 200,000 cases are diagnosed.* If you've had breast cancer, you probably know these numbers by heart. With the progress we are seeing in early detection and the increasingly effective treatment of breast cancer, more women are surviving longer. More and more women are now living beyond breast cancer.

I am a physician specializing in breast cancer treatment, and I have the privilege of taking care of some of the women who make up these numbers. It wasn't long after I started treating women with breast cancer, over ten years ago, that I realized patients who had finished treatment continued to feel distressed. Instead of feeling thrilled to have the breast cancer experience behind them, they were uneasy, sometimes anxious. What do I do now? Am I really cured? Is it safe for me to get pregnant? Can I take hormones? Will my daughter get breast cancer? What should I tell the man I've just met? Will my cancer diagnosis affect my ability to get health insurance? My patients desperately wanted an intelligent, in-depth response to their questions as they moved from "I have breast cancer" back to "I am leading a normal life."

I found myself saying over and over, "We don't have good answers to your questions." I'm a hands-on, can-do person, and it was enormously frustrating to me to leave my patients dissatisfied and fumbling about for answers to these vital questions. I felt I had to do something to tackle this astonishing void of information.

The whole point of early detection and effective treatment of breast cancer is to provide long life, and good quality of life, after treatment is over. Support and education are crucial parts of your care; you need them to nurture and sustain your physical, emotional, and financial health. I decided the most effective way to help my patients was to create educational conferences designed for their needs-not unlike the kinds of conferences physicians organize to keep up to date and informed-with seminars featuring expert speakers, panel discussions, and small group workshops where women could ask the experts the questions on their minds, and where we could hope for answers from those at the cutting edge of new work. So, in 1992, the organization Living Beyond Breast CancerSM was born in the spare room on the third floor of my busy and overcrowded home.

To date, we've had nearly two dozen conferences in the Philadelphia area, with attendance close to 1,400 women for a single program. We've recruited internationally recognized experts (including Drs. Larry Norton, Leslie Schover, Keith Block, David Spiegel, and David Eisenberg) as speakers. Twenty-seven medical institutions in the Philadelphia-Delaware Valley have been full participants. Twenty-five thousand survivors are individually invited to each of our programs and our educational newsletters reach over 10,000 members four times a year. We recently started a survivors' telephone helpline to provide information, support, and referrals, we're on the Internet.. No other single organization in the world has enlisted such full support of these diverse medical institutions nor reached out to as many women and families with education on living beyond breast cancer. With our two large-scale yearly conferences, multiple community-based workshops, low literacy materials, and educational newsletters, we are in contact with our members perhaps more often than they are in contact with their own physicians. "I arrange my life around these conferences. I am always informed and never patronized."

Today we have a full staff, a proper office in a small commercial building just a few blocks from my home, major individual, grant, and corporate support, and many small regional conferences as well as our big ones. The Living Beyond Breast CancerSM organization has become an extension of my family.

My immediate family includes my three children: Elias, who is ten years old, and eight-year-old twins, Henry and Isabel. They love eavesdropping on adult conversations, putting together the wacky birthday parties we have in our home, and fooling around with one another and their pets (two dogs and seven mice). I've promised them we'll write a book together now that Grandma-my coauthor-and I have finished ours. My husband is a pediatrician, and while I zip around doing my thing, he quietly goes his way, stepping in to make dinner or scooping the kids off to ice-skating or fishing. (I am not great at organized-or unorganized-sports, and I grit my teeth when I'm forced to exercise.) The best of times, though, are the family get-togethers, where the kids match up with their close cousins and there's a regular free-for-all of activity and talk-we are all big-time talkers. Now we gab on E-mail.

I think it's this love of family and the people in it that carries over to the work I do. Our family has been seriously affected by breast cancer, although my mother and I have not had breast cancer ourselves. I think and care a great deal about my patients and the thousands of women who are members of Living Beyond Breast CancerSM, and I try to provide as much support, up-to-date and timely information, and advice as I can, so they feel informed and empowered to make the best decisions for themselves.

More recently, in traveling across the country speaking to diverse groups about breast health basics and living well beyond breast cancer, I have included a performance, "The Patient Doctor": the doctor-
patient relationship from the perspective of the doctor as patient.

Doctors and patients today work as partners; no book, including this one, can ever replace the services of your physicians, nurses, and other support staff, but I hope that reading this book will help to strengthen that partnership. My patients know what they want, and I must listen to what they are telling me before I start telling them what their options are.

Listening to my patients and thinking about the profound effect breast cancer has had on their lives, and wanting to make a positive difference in their lives, has led to this book. Their questions and concerns, and the topics covered at the Living Beyond Breast CancerSM conferences inspired the subject matter.

Although the book occasionally speaks to women who are at the point of initial diagnosis, the purpose of this book is not meant to deal with your initial treatment decisions. It is designed to help you after you have established your original treatment plan, to help you focus on the issues that you may face as you go through treatment and beyond. When treatment is over, you may no longer be doing anything active to fight the cancer, and everyone thinks you're back to normal; you may be unprepared for, and overwhelmed by, a sense of bewilderment, loss, and even separation anxiety. This book will help you manage your ongoing relationships with your doctors, nurses, and other health care professionals, empowering you to work to your best interest with your health care team. And it will show you how to find support beyond your immediate physical needs.

What kinds of tests do you need to monitor your health and the risk of recurrence? What information will help you make treatment decisions for reconstruction, tamoxifen, pain, or complementary medicine? I have included a description of the tests and breast-area self-examination technique that help you and your doctors evaluate the presence or absence of cancer-how you examine yourself after getting breast cancer is very different from how you conducted breast self-examination before.

I also offer an explanation for the lingering side effects of treatment, such as hair loss, breast and arm edema, and fatigue. For those who want to know how the body fights breast cancer, and why some women are more vulnerable to breast cancer than others, there are chapters on the immune system and the breast cancer genes. You may also need advice to get back to living a normal life, managing your love life, and having a child.

I've included a chapter on how to grow older and navigate through troubling menopausal symptoms, particularly when they come on abruptly and prematurely with chemotherapy, and how to cope with sudden termination of hormone replacement therapy upon diagnosis. A normal life includes dealing with job and health care issues, and wills, so there are chapters to help you navigate through those parts of your life.

Most of you want to know what you can do to become as healthy as possible for as long as possible; how you improve your nutrition, control your weight, and add exercise to your agenda. I've tried to address all of these issues.

The big fear for all women who have had breast cancer is recurrence, and there are five chapters devoted to this: whether you can live cancer free; when cancer recurs, how to manage local and regional
recurrence, metastatic disease, and pain management.

Some women do not outlive cancer. Chapters on endings and hospice are meant to help with quality of life, quality of death, and the overwhelming physical, emotional, spiritual, and financial issues that attend the close of life.

Last, and into the future, are hopes for cure and prevention, and what each of you can do to reach out to others and to help put an end to breast cancer altogether.

You can pick this book up and put it down many times over the years after your diagnosis and treatment as issues evolve for you-from surmounting infertility to battling hot flashes to cooking a healthful meal to figuring where the next "cure" may come from. I hope that the information and suggestions I provide in this book are respectful of your concerns and address the issues in your life with honest and reasonable answers, although in some cases, the "right" answer may not yet be available.

As a breast cancer survivor, you want so much to live well and long; you've been given what many call a "second chance." This book is geared to that second chance, to making every day of the rest of your life better-whether by helping you manage your general medical concerns, by encouraging you to adopt life-enhancing eating and exercising habits, or by getting you and yours to appreciate your special virtues and celebrate the life you share together.

This book has been a joint effort with my mother, Ellen Weiss. It represents the combined energy of two generations of women working together toward a mutual productive goal, in a loving (if sometimes embattled) effort to find the right word or the right direction for what we're laboring to present to you.
Living Beyond Breast CancerSM is a nonprofit organization, and now it is a book, too, for women of many generations to come together for support, warmth, camaraderie, and clear information that will enrich and direct you to what we all hope will be a long, happy, healthy, and fulfilling life.

From the Trade Paperback edition.

Meet the Author

Marisa C. Weiss, M.D., is a physician who specializes in taking care of women with breast cancer.  She is founder and president of the nonprofit educational organization Living Beyond Breast Cancer, which promotes the health of all women affected by breast cancer with conferences, workshops, newsletters, and a help line.  Dr. Weiss works and lives in the Philadelphia area with her husband and three children.

Ellen Weiss has served as editorial consultant to Living Beyond Breast Cancer since its founding.  She is also the author of The Secondhand Supershopper.  This is the first professional collaboration she has had with any of her six children.  She and her husband live in the Philadelphia area.

From the Trade Paperback edition.

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