The Breast Cancer Answers Book: Your Guide to Achieving Emotional Reconstruction®

By MD Jay K. Harness and Phyllis Gapen

BREAST CANCER IS NOT YOUR LIFE.

You hear the words of your diagnosis, “You have breast cancer.” Your anxiety is now reality.

Your world seems suddenly overwhelmed, unpredictable. With the jolting label you did not seek, breast cancer is now a part of your life.

Yet breast cancer is no

• Language: English
• Publisher: Jay K Harness MD, A Med Corp
• Release date: Apr 15, 2016
• ISBN: 9780692565322

MD Jay K. Harness

JAY K. HARNESS, MD, FACS, a past president of The American Society of Breast Surgeons and Breast Surgery International, works full time in private practice as a breast surgeon in Orange, California. He currently serves as a clinical professor of surgery at University of California, Irvine. For twenty-eight years, Dr. Harness worked in full-time academic general surgery at institutions such as the University of Michigan, Tufts University, the University of California, Davis, and the University of California, San Francisco. For the past three decades, Dr. Harness has advocated for a multidisciplinary team approach to the treatment of breast cancer. He served as the founding medical director of the University of Michigan's Breast Care Center (BCC) in 1985. The Michigan BCC became one the first academic multidisciplinary breast cancer programs in the United States. His first book, Breast Cancer: Collaborative Management, promoted multidisciplinary care. Subsequently, Dr. Harness established and directed similar breast cancer programs in Boston and Orange, California. In 2011 Dr. Harness cofounded Breast Cancer Answers (breastcanceranswers.com), a website designed for patients and their families. This site introduced the first social media program for breast cancer patients, and it provides information from breast cancer experts that can be accessed anonymously and for free. Visitors will find a searchable library of informative videos with answers to questions raised by women with breast cancer.

Book preview

Praise for

THE BREAST CANCER ANSWERS BOOK

"With palpable warmth and caring and in a most straightforward and encouraging fashion, The Breast Cancer Answers Book provides those facing breast cancer and their loved ones an easy understanding of the medical issues, emotional support and well targeted insights and planning tips. A must read!"

—Barbara Rabinowitz, PhD, Founder, National Consortium of Breast Centers (NCBC)

"If you need answers about breast cancer, this is your book! It will help you understand the terminology and guide you through decision-making. Jay and Phyllis have succeeded in creating a unique resource that is understandable, practical and realistic. The Breast Cancer Answers Book will be your beacon, anchor and compass."

—Shawna C. Willey, MD, FACS, Professor of Clinical Surgery, Director, MedStar Regional Breast Health Program

"Dr. Jay K. Harness is one of the great translators of complex scientific information. The Breast Cancer Answers Book is like a warm fireside chat that provides a mental landscape for creating a road map to optimal survivorship, quality of life, and Emotional Reconstruction—at the start of the diagnosis. This book helps to lighten the load of the journey with credible facts shared through engaging stories and examples that highlight key breast cancer decision points."

—Marie M. La Fargue, MPH, Four-Time Cancer Road Warrior and 22-year Survivor

"As a patient advocate it’s rare to find a book that focuses on the medical side of breast cancer that is so easy to understand. The Breast Cancer Answers Book has clear takeaways. You won’t want to put it down!"

—Michelle King Robson, Founder of HER Inc.

"The Breast Cancer Answers Book takes the uncertainty and guesswork out of understanding complex medical terms. You can hear the warmth, care and insight in Jay’s and Phyllis’s writing, which leaves readers feeling encouraged to work through these difficult times. Definitely an excellent read!"

—Lisa A. Ekman, breast cancer survivor, Ekman Associates

"The Breast Cancer Answers Book provides a unique perspective for both the survivor and the provider. The tools to prepare for the breast cancer journey, its discussion of decision making, treatment options, physical and emotional recovery, and survivorship issues provide a practical and thoughtful resource for survivors and their caregivers."

—Jennifer R. Klemp, PhD, MPH, Founder/CEO, Cancer Survivorship Training, University of Kansas Medical Center

More About

THE BREAST CANCER ANSWERS BOOK

Based upon decades of patient treatment and medical expertise—for the first time in a how-to source co-authored by patient and physician—The Breast Cancer Answers Book offers you wisdom into how breast cancer is in fact a variety of diseases, insight into your specific form of breast cancer, why time is your friend, your treatment choices, the roles of each doctor and professional on your medical team, and the power you possess in treating your disease and your body.

Answer your unasked question.

Just as you may be treated so that your breast is surgically reconstructed—how may you achieve Emotional Reconstruction® over breast cancer? Here for the first time is your answer.

Breast cancer is not your life.

You hear the words of your diagnosis, You have breast cancer. Your anxiety is now reality.

Your world seems suddenly overwhelmed, unpredictable. With the jolting label you did not seek, breast cancer is now a part of your life.

Yet breast cancer is not your life.

Make sense of your diagnosis.

Call upon the strength of your femininity to gain information strength over the words you just heard.

Turn to intelligence.

Author Bios

JAY K. HARNESS, MD, FACS, a past president of The American Society of Breast Surgeons and Breast Surgery International, works full time in private practice as a breast surgeon in Orange, California. He currently serves as a clinical professor of surgery at University of California, Irvine. For twenty-eight years, Dr. Harness worked in full-time academic general surgery at institutions such as the University of Michigan, Tufts University, the University of California, Davis, and the University of California, San Francisco.

For the past three decades, Dr. Harness has advocated for a multidisciplinary team approach to the treatment of breast cancer. He served as the founding medical director of the University of Michigan’s Breast Care Center (BCC) in 1985. The Michigan BCC became one the first academic multidisciplinary breast cancer programs in the United States. His first book, Breast Cancer: Collaborative Management, promoted multidisciplinary care. Subsequently, Dr. Harness established and directed similar breast cancer programs in Boston and Orange, California.

In 2011 Dr. Harness cofounded Breast Cancer Answers (breastcanceranswers.com), a website designed for patients and their families. This site introduced the first social media program for breast cancer patients, and it provides information from breast cancer experts that can be accessed anonymously and for free. Visitors will find a searchable library of informative videos with answers to questions raised by women with breast cancer.

PHYLLIS GAPEN was a Houston-based journalist who survived breast cancer for twenty-four years. She worked to help generate a vision of how new technology, clinical research, creatively organized medical care, and human compassion can push forward science and medical practice.

For more than fifteen years, Phyllis worked with a university team whose engineers helped build advanced Internets for educational and research efforts in Texas. Among other things, that work improved the commodity Internet used by the public. These efforts enabled better transmission of sound and pictures over the Internet, eliminating jerky movements in video playback, and paving the way for popular sites such as YouTube.

Better networks also assisted health care professionals in bringing innovations to the practice of medicine. The video-based breast cancer website Breast Cancer Answers is just one example of such advances.

During her career, Phyllis published more than 100 articles in national publications, including The Wall Street Journal. She edited three books, and her work has been cited in fifteen books on health and science policy.

Phyllis often wrote about groups of patients who have difficulty advocating for themselves. She dreamed of a time when cancer therapies would be less toxic, and large numbers of patients would go on to live long, productive lives.

Copyright © 2015 by Jay K. Harness, M.D. and Phyllis Gapen, B.A.

All Rights Reserved.

No part of this book may be reproduced, stored in a retrieval system or transmitted in any form by an electronic, mechanical, photocopying, recording means or otherwise without prior written permission of the publisher.

For more information contact:

Breast Cancer Answers

http://www.breastcanceranswers.com

Paperback: 978-0-692-56533-9

eBook: 978-0-692-56532-2

Book design by Dotti Albertine

This book is dedicated to

the women and men

whose lives are changed forever

by the diagnosis of breast cancer.

You are not alone.

We are all in this together.

Together we will triumph.

We Live You®

Contents

Many Thanks

Introduction

CHAPTER 1 Time Is Our Friend: Taking Time to Plan Treatment Before Surgery

CHAPTER 2 Treatment Planning: A Journey of Discovery

CHAPTER 3 Lumpectomy or Mastectomy: Issues in Decision-Making

CHAPTER 4 Unseen Guides: The Roles of Pathologists and Radiation Oncologists

CHAPTER 5 Listening: Emotionally Preparing for Surgery

CHAPTER 6 Regaining Wholeness: Emotional Reconstruction

CHAPTER 7 Systemic Therapy: Chemotherapy, Targeted Therapy, and Anti-Hormonal Therapy

CHAPTER 8 Radiation Therapy

CHAPTER 9 Lymphedema: Treating It

CHAPTER 10 Paths Through Treatment

CHAPTER 11 Survivorship

CHAPTER 12 Conclusion

Glossary

Appendix

Many Thanks

We wish to thank our colleagues, our patients, and others who lovingly reviewed the contents of this book and gave us their invaluable input:

Blynn Bunney, PhD

Michele Carpenter, MD

Norma Castro

Stacy Ferrante, RN

Afshin Forouzannia, MD

Wendy Hartley

Rita Jones

Shu-Yuan Liao, MD

Maria Lopez-Carale, RPT

David Margileth, MD

Mynde Mayfield

Alice Rodriguez, RN

Introduction

Breast cancer greatly impacts the lives of women, changing their lives forever. From the moment a woman receives a breast cancer diagnosis, she begins a physically and emotionally challenging journey.

In the beginning, no map exists for her unique and personal journey. A woman takes the first steps on her own, cautiously testing her footing on a road on which she feels vulnerable. As she adapts to her new reality, she taps her inner resources and turns to special guides who will accompany her on her healing journey.

Some of these guides are people she’ll come to know well. Others she’ll never meet. They are all part of the large medical team that will map out a personalized plan for treating her cancer and then accompany her on what will become a lifelong journey. This plan will be individualized to her medical situation.

Her experience will illustrate the dawning of an era, and medical revelations that promise to change the paradigm of breast cancer treatment. A one-size-fits-all approach will no longer be the norm. This book provides a guide to the new breast cancer treatments made possible through scientific achievements. In simple language, it explains the steps that breast cancer patients will take along a path that leads to the execution of a personalized treatment plan. That plan evolves from the use of a multidisciplinary approach to the diagnosis and treatment of breast cancer.

Such plans include steps for treatment and follow-up, screening for recurrence, dealing with treatment side effects, and adapting to a lifelong status as a cancer survivor.

This book was written in partnership with the team from Breast Cancer Answers (breastcanceranswers.com), including an experienced breast cancer surgeon and a twenty-four-year breast cancer survivor. The book is packed with information— and regularly augmented with emerging data about breast cancer developments published on the website, which keeps patients and their families informed.

In the future, women’s breast cancer experiences will change, reflecting progress in diagnosis and treatment. This book maps the paths now possible for the healing journeys women will undertake which results in achieving Emotional Reconstruction.®

Reaching for your hand, let us begin the journey together.

You are not alone.

Chapter 1

Time Is Our Friend: Taking Time to Plan Treatment Before Surgery

Women who discover that cancer is growing in their breasts want to get rid of it. Many of them want to do so quickly—today, tomorrow, no later than next week.

But rushing into surgery without taking the time to gather sufficient information about the particular cancer often complicates matters. Hurrying can lead to extra operations and undesirable outcomes that neither the surgeon nor the patient want.

Planning surgery takes time. Many steps lead up to the physician and the patient making good, shared decisions about modern, individualized care that combats tumors. Carefully considered choices can lead to better outcomes and better quality of life after treatment. In some cases, planning helps reduce the severity of the measures required to treat the cancer.

Several decades ago, patients newly diagnosed with breast cancer were quickly taken into an operating room for surgery. But today’s tools enable physicians to tailor treatments for individual patients. Devising such personalized treatment requires that doctors gather information about an individual, and about her specific breast cancer.

Today’s surgeons look at mammograms, breast MRIs (magnetic resonance imaging), ultrasound studies, and the pathology results of core needle biopsies. They also consider the woman’s breast size and her preferred choices among treatments. Before a surgeon steps inside the operating suite, he or she talks to the patient about breast conservation versus mastectomy.

Following the planning steps used by a surgeon provides insight into this intense process.

In my practice in Orange, I like to tell my patients that time is our friend, explains California breast surgeon Jay Harness, MD. "What do I mean by that? I am conveying a high intention: the patient and I want to go to the operating room only once, and we want to know exactly what we’re going to do in the operating room. We want to know that what we’re planning to do in the OR meets the patient’s needs and provides good cancer treatment.

While my patients are waiting to set a date for surgery, I ask them to embrace their cancer mentally, emotionally, and spiritually. This involves accepting the reality that a tumor exists, and marshaling internal resources to face that reality and undergo treatment. Doing so will prepare you to work with a medical team to chart a path to eliminate that cancer. Part of that process involves establishing trust in the team of specialists who will care for them.

How do you build your inner strength? Talking things through with family or friends, a clergy member, or a therapist may aid you in finding the inner strength to cope with the new reality of having cancer. Dance, exercise, sports, board games, music, painting, and writing may assist you in accessing that strength at your core.

Treatment Guided By a Team

Your surgeon isn’t acting alone. At the best medical centers, you are cared for by a team that consists of a breast surgeon, a medical oncologist, a radiation oncologist, a breast radiologist, and an experienced pathologist. Genetic counselors, integrative medicine specialists, pharmacologists, patient navigators, dietitians, nurses,