Just Get Me Through This! - Revised and Updated

By Deborah A. Cohen and Robert M. Gelfand, M.D.

You Can Get Through This

Your doctor told you it was breast cancer. So now what?! You'll need plenty of essential advice—the kind that only comes from someone who's been there.

In Just Get Me Through This! Deborah A. Cohen and Robert M. Gelfand, M.D. help you deal with all the ups and downs of the breast cancer experience. From the shock of diagnosis to getting through treatment to getting on with your life, they pack it with plenty of straight talk and practical tips. This newly updated edition also includes advice from two prominent breast cancer surgeons.

Discover:

The latest data on hormonal treatments

How cornstarch can help you breeze through radiation

Why a calendar can help you get through chemotherapy

Information on the latest drugs used as part of chemotherapy

How to ease back into an intimate relationship

Who might be your best ally when you're feeling blue

The surefire way to beat insurance and workplace hassles

What medical professionals say about everything from surgery to soy

Each step of the way, this wise and witty companion will be there with unfailing inspiration and heart-to-heart support. It's also simple to use, with an accessible format—to make even the toughest days a whole lot easier.

A Harvard Business School and Smith College graduate, marketing executive Deborah A. Cohen was, like so many others, going about her life as a young and healthy woman when she was unexpectedly struck with a diagnosis of breast cancer. As a result of her illness, the Wisconsin native became active in several breast cancer advocacy efforts, including "Climb Against the Odds," a Cancer Coalition's Leadership Education and Advocacy Development Program, and Peer Review Committees for the American Cancer Society's research programs. The research and writing of Just Get Me Through This! was a natural next step for Cohen in her commitment to helping others cope with and battle this disease.

Robert M. Gelfand, M.D., is an oncologist with a private practice in New York City. He is a Clinical Assistant Professor of Medicine at the Weill-Cornell Medical Center and at New York Presbyterian Hospital, where he also teaches. He received his undergraduate degree from the University of Pennsylvania and his medical degree from the State University of New York at Brooklyn. He completed his residency in internal medicine at Mount Sinai Hospital and a fellowship in hematology and oncology at The New York Hospital-Cornell University Medical Center. Dr. Gelfand is married and has three daughters.

Faith A. Menken, M.D., is a surgeon practicing at New York-Presbyterian/Weill Cornell Medical Center in New York City. She went to medical school at Cornell University Medical College and did her internship at Mount Sinai Hospital and her residency at the New York Weill-Cornell Medical Center. She lives in New York City.

Eugene J. Nowak, M.D., is a surgeon practicing at New York-Presbyterian/Weill Cornell Medical Center in New York City. He went to medical school UMDNJ/New Jersey Medical School and did his internship and residency at the New York Weill-Cornell Medical Center. He lives in New York City.

• Language: English
• Publisher: Kensington Books
• Release date: Jul 25, 2012
• ISBN: 9780758285478

Deborah A. Cohen

Like your friend, sister, daughter, coworker or neighbor, Deborah A. Cohen was going about her life as a young and healthy woman until she was unexpectedly struck with a diagnosis of breast cancer. A graduate of Harvard Business School and Smith College, she is a marketing director for the professional services firm PricewaterhouseCoopers. In addition to her “day job,” she is active in several breast cancer advocacy efforts, including “Climb for the Cure,” a multi-million dollar mountain climbing fundraiser, and the Breast Cancer Coalition’s Leadership Education and Advocacy Development Program. Originally from Milwaukee, WI, she currently resides in Rowayton, CT and New York City. Robert M. Gelfand, M.D., is an oncologist with a private practice in New York City. He is a Clinical Assistant Professor of Medicine at the Weill-Cornell Medical Center and at New York Presbyterian Hospital, where he also teaches. He received his undergraduate degree from the University of Pennsylvania and his medical degree from the State University of New York at Brooklyn. He completed his residency in internal medicine at Mount Sinai Hospital and a fellowship in hematology and oncology at The New York Hospital-Cornell University Medical Center. Dr. Gelfand is married and has three daughters.

Book preview

journey.

FOREWORD BY DR. GELFAND

Over the past decade there has been a growing movement in the practice of medicine—patient advocacy. Patients are increasingly taking charge of their own health and taking steps to be well informed and active in decisions about their own bodies. The passive patient with a whatever-you-say-Doc attitude is becoming the exception rather than the norm. However, in the case of a serious, complex illness like breast cancer, the proactive patient may end up confused, overwhelmed with information, and excessively anxious. The saying that a little knowledge is dangerous is apt for these situations. The acquisition of great amounts of technical information by breast cancer patients without medical training—from books or extensive exploring on the Internet—frequently ends up aggravating the anxiety. A lot of the questions that I get asked by breast cancer patients reflect their earnest attempts at self-education but also their minimal understanding of the complexity of the underlying issues, or knowledge of how the information should be organized and utilized.

Women with breast cancer, and their family and friends, most of all need a balanced approach to this illness. They need a basic road map to help them deal with the up-and-down journey from diagnosis into the world of the patient and back to the world of normalcy—a map that outlines the major phases of the process, offers guidance and insights along the way, and presents basic technical information in simple, understandable language. Just Get Me Through This! strives for balance through the collaboration of a seasoned professional and an intelligent patient. The result is neither a technical manual to breast cancer, nor a personal biography of overcoming breast cancer. Rather we have blended the perspectives of doctor and patient—enhanced by extensive conversations with other medical professionals, patients, and survivors—to offer readers a well-rounded, straight-from-the-shoulder view of the illness and of appropriate responses. We do not aim to be the only source of information and insight that you will need. We simply offer a foundation on which to build trusting, open dialogue not only with your health care team (e.g., surgeons, oncologists, nurses), but with family, friends, and even coworkers.

One of the most important and least written about aspects of breast cancer is the degree to which the diagnosis alters one’s life experience. By and large doctors do not prepare patients for more than the technical aspects of treatment. For example, doctors will go to great lengths to explain the powers of today’s highly effective antinausea drugs, but they will rarely help a patient manage the inevitable emotional traumas, anxieties, and practical difficulties of chemotherapy. Few surgeons will discuss the fact that a spouse or significant other might have difficulty coping with the results of a mastectomy or other bodily changes, and recommend ways to improve communication to work through such tough relationship issues. And who warns a patient of the possible coldness and even disappearance of old friends who are terrified by her cancer diagnosis because of their own issues with mortality?

Yes, it is wonderful and comforting to learn from your doctor that chemotherapy and all the other conventional medical treatments available today are typically well tolerated as long as the symptoms are managed well, and that by and large most women go on to live normal lives in the aftermath of cancer. Yet it is the nonmedical facets, the gestalt of the whole breast cancer experience, that most of the 200,000 women a year diagnosed with breast cancer are unprepared for. We have written Just Get Me Through This! to address that need. It is our hope that when you have turned the last page, you will find the knowledge empowering, the insight balanced from both the human and treatment perspectives, and the empathy offered by the authors comforting.

Robert M. Gelfand, M.D.

Clinical Assistant Professor of Medicine

Weill Medical College of Cornell University

FOREWORD BY DR. MENKEN AND DR. NOWAK

We are honored to have been asked to contribute to this newest printing of this very special book. In rereading the prior edition, written just a few years ago, we were sharply reminded of the progress we have made in the surgical management of patients with breast cancer. Treatments that were just a short time ago experimental, controversial, or not even conceived of yet have now become routine. As such, we hope that our input as surgeons will be a valuable edition to Dr. Gelfand’s medical input in helping patients to understand their treatment options better, and to navigate this sometimes daunting process.

As physicians, we do our best to educate, guide, and reassure our patients. The surgeon is most often the first breast expert the patient meets. His or her empathy, understanding, and approachability are of paramount importance. We often set the tone for the patient’s experience. Our ability to communicate is every bit as important as our surgical skills.

Nothing, however, can be as reassuring as hearing from someone who has made it through the journey. For this reason, we are proud to be a part of what must be considered Debbie Cohen’s labor of love.

Faith A. Menken, M.D.

Eugene J. Nowak, M.D.

INTRODUCTION

I want to talk to you for a moment about Fudgsicles. Fudgsicles? Are you crazy? I have a life-threatening disease and you want to talk to me about Fudgsicles?!?! Can’t you just help me get through this?

Yes, believe it or not, I do want to talk about Fudgsicles, as they actually may be very important in helping you get through the next six to nine months of your life. Here’s why.

When I was recovering from my initial surgery, I was bombarded with advice from friends and family about books to read on cancer treatments, in order to be prepared to talk with surgeons, oncologists, and other specialists about the best course of treatment for my disease. This is the new world of health care, and I am the perfect model of the patient activist. I wanted to be involved in a true partnership with the doctors to make decisions about my own body and my own life. I was not going to sit there and simply be told what to do. Yet I found it wasn’t all that easy.

When I visited my local bookstore to begin my process of becoming an informed patient, I almost passed out in the aisleway—from terror, not from my illness. The vast majority of books were harsh, clinical reference materials, written solely by doctors, chock-full of terrifying mortality statistics. They talked about how sick I was going to get, either from the disease or from the treatments to eradicate the disease, not how to manage the treatments and get well. The remainder were heroic biographies by cancer patients themselves—some survivors, some not—about their own courageous battles. No thanks, I have my own battle to contend with right here at home. I don’t need to read about anyone else’s right now.

So, I threw away all those books, and started talking to people—doctors, nurses, survivors, whoever would talk to me—and it was amazing what I learned, what similar, consistent information started coming back to me regardless of the source. A flagship example? Before I went for my first chemotherapy treatment, I had three different people—one oncologist, one chemotherapy nurse, and one of the women in my support group who had been through the same treatment regimen—tell me that during the ten to fifteen minutes that the drug Adriamycin is being administered to me, I should suck on ice chips, Popsicles, or something cold. Why? Because one of the potential side effects of that particular drug is mouth and gum sores. But for some reason, sucking on something cold minimizes or even eradicates mouth sores.

Now, where was that book, the book that contained all of that nitty-gritty, practical advice that would just get me through the next six months—the operating guide, the instruction manual, the "how to’s" of breast cancer? It didn’t exist. So, I started an information-gathering process, which I’ve presented here in a package called a book. It contains all those practical tidbits of advice gathered from every conceivable source—from breast surgeons, medical and radiation oncologists, and nurses at some of the world’s leading cancer centers; from health care consultants and medical literature; from nutritionists, hairdressers, dentists, and other personal-care professionals; from fellow patients and support groups; and even from plain old books. I personally sifted, sorted, and tested their advice, insights, anecdotes, and even their wives’ tales, then added my own perspective.

So now the book exists, and you are reading it. We don’t know if or why sucking on Popsicles prevents mouth sores—it may be that just as the cold restricts blood flow, it restricts chemotherapy flow to the area—but it sure helps many, many women. And wouldn’t it make those potentially unpleasant, dark, scary moments just a bit more tolerable? I actually prefer Fudgsicles, please, but I was willing to do whatever it took to get me through treatment. But wait. There’s more than that to our discussion of Fudgsicles. This book is not only about advice, but about attitude as well. Fudgsicles bring us back to childhood, back to those carefree, breezy summer evenings when the highlight was sitting on the front porch with our best friend and guessing what time the ice cream man would turn the corner onto our street, ringing his bell and bringing a smile to the faces of all who awaited him. This book is also about rediscovering those slower, simpler moments of life, about recouping that positive attitude from childhood that each day promises something special and something new to be discovered, if only we take a minute to open our eyes and look.

Breast cancer is an eye-opening, life-affirming experience. You may think it won’t change your life, that you’re tough, that you can just keep on going and functioning in the life-is-normal-as-possible mode. But you can’t. As everyone tells you, and as you won’t believe, it will change your life in many ways:

• You will look at life in a whole new way, as something you are lucky to be experiencing.

• You will appreciate every day, just because it is there and has been given to you to enjoy.

• You won’t take your health for granted, and will take better care of your mind and your body, making yourself a priority (rather than your family, friends, job, or other distractions).

• You will be calmer . . . the little things won’t seem to bother you as much.

• You won’t worry about tomorrow as much, but live for today.

• You will draw nearer to the people who bring meaning and fulfillment to your life, and get rid of those who don’t (crises have an amazing way of revealing someone’s true character).

• You will gain extreme clarity . . . about exactly who you are and what you want from your life.

For many women I encountered, this experience gave them the courage to take action regarding major decisions in their lives that they had been postponing or evading—getting out of bad relationships even though they might have been comfortable, leaving dead-end jobs, reevaluating relationships with estranged family members. After all, once you’ve been through breast cancer, nothing else seems quite as ominous or overwhelming.

Yes, there’s no going back. Life will now always be divided into "before

B.C."

and "after

B.C."

As I sat in my gynecologist’s office, discussing what it meant that my lab tests were returned showing malignant cells, he said, You won’t believe it now, but good things will come out of this. Yeah, right! Now, many months and many tears later, slowly but surely, I am starting to believe him.

Above all, this book is about optimism. It is about how to look for those good things that will arise out of this experience, about focusing on long-term survival and lifetime plans, and about finding some humor and maintaining a sense of sanity in the midst of seeming chaos. The six-to-twelve-month experience of diagnosis, surgery, and treatment can seem interminably long, like a never-ending marathon, a gauntlet of professionals pushing, poking, and invading your body, followed by a proliferation of advice upon which no two professionals seem to agree. But you will get through it, and here, in the pages that follow, is your step-by-step guide to help you through the chaos, catastrophe, and turmoil of the entire breast cancer experience.

The book is organized into four sections of chronological progression, from that disbelieving moment of diagnosis to that anticlimactic, ever-elusive finish to the treatment, and that strange transition period back to real life. We will cover:

• The Diagnosis—Managing the News that you have cancer, including comprehending it yourself, and determining how and when to communicate it to the broader world; and Swinging into Action, which provides perspectives on gathering the information you need to make informed decisions, establishing your emotional support and coping mechanisms, and building the best health care team you can find to assist you in your journey.

• Surgery—Deciding on Surgery offers an explanation and factors to determine which surgical alternatives might be appropriate for you; Undergoing Surgery provides an overview of the surgical experience and what to expect from the hospital visit; and Recovering from Surgery sets forth what you can expect from your body, emotions, and the actual surgical results.

• Treatment—Deciphering Treatment Alternatives discusses the plethora of choices available, how they work, and why your health care team might recommend various options for you; Managing Treatments: Chemotherapy and Radiation delineates all the practical advice you need for getting through both the process of treatment and its impact on your life, as well as managing any physical side effects and balancing demands of the workplace.

• Getting Back to Life—Ending Treatment explores the often surprising issues you may face in your transition back to your normal life (although you will never quite be able to go back to where you came from); Maintaining a Healthy Lifestyle offers suggestions on how nutrition and the world of alternative medicine can optimize your strength and well-being.

Sprinkled throughout the text are portions written by Dr. Robert M. Gelfand entitled A Note from the Doctor, which explain some of the more clinical technical aspects of managing breast cancer. And at the end of each section, you’ll even find some Rules of the Road directed to family, friends, and others who will accompany you on your journey through breast cancer.

So before we get into the guts of this book, you’re probably wondering just who I am and why I am writing this book. What makes me the expert? Unfortunately for us both, I may be just like you. Nothing made me the expert until one day without any warning this ominous disease called breast cancer reared its ugly head and slapped me in the face. No family history, no other health issues, nothing. I’m just a fairly normal person with a normal life, who could be your friend, coworker, next-door neighbor, wife, sister, or daughter.

All in all, my life up to now has been good. No, it hasn’t been perfect, but in retrospect, it’s been pretty terrific, now that it’s been threatened to be taken away from me. I’ve been blessed with a close family, incredible friends, a never-ending array of interesting professional challenges and coworkers, and a wide variety of athletic, intellectual, and social interests and activities. I’ve seen a lot of the world and learned to appreciate what I have, and to be content to know that there will always be things that I might never have.

But perhaps most important to you, my diagnosis helped me realize that, if caught in its early stages, breast cancer is not a catastrophic disease, but merely a potentially catastrophic situation. My expertise comes from experience, from being able to offer real-world, in-the-trenches, been-there guidance on how to manage your way through—and thereby avert—physical, emotional, and even financial catastrophe.

And finally, just to be safe, I recruited Dr. Robert M. Gelfand, an oncologist whom I encountered when I visited him for a second opinion. After he spent more than two hours with me, objectively, but compassionately and patiently, answering each and every one of my questions—no question was too dumb to ask—I was convinced he was to be my co-author. He generously agreed to provide expertise regarding the more technical aspects of the book, and to ensure that nothing I discuss or suggest is harmful or improper.

In this newly updated edition, we have added the input of two esteemed breast surgeons: Drs. Faith Menken and Eugene Nowak. As the care of breast cancer patients has evolved both medically and surgically, input from experienced surgeons has surfaced as a clear need. Hopefully, you will find this addition to be of great value.

So, enter breast cancer.

PART I

THE DIAGNOSIS

1. Managing the News

2. Swinging into Action

Rules of the Road for Family, Friends, and Other Participants

CHAPTER 1

Managing the News

There is no good way to receive the news that’s the single fear beyond your worst dreams—that you have cancer. No, not somebody else, but you. This chapter will cover a few ways to handle this nightmare over the first few days, in terms of:

• Comprehending the news yourself, and communicating it to those few people who need to know as soon as possible, both for your sake, if only to be able to vocalize it, and theirs.

• Reacting to the news, and a few ideas for giving yourself a helpful perspective on the situation.

• Spreading the news, and determining how broadly and by what means to expose yourself to the outside world.

COMPREHENDING AND COMMUNICATING THE NEWS: AN UNEXPECTED TIDAL WAVE

Malignant Cells: Are Those the Good Ones or the Bad Ones?

It’s 4

P.M.

on a Thursday afternoon, and I’m waiting for a meeting to begin in my office. The phone rings and I decide to answer it while I await my guest. I had been to see a breast specialist forty-eight hours earlier for a biopsy on a lump I had found on the side of my breast, but to be honest, I hadn’t thought twice about it since. He had reassured me, It’s probably nothing. With women your age, most likely—80 percent chance—it’s just a fibrous knot. I had no family history, knew nobody who had breast or any other cancer in my age group, so I had just put it out of my mind.

No more; actually, never again. When I answered the phone, he got straight to the point. Hello, this is Gene Nowak. I’m sorry to tell you this, but the lab tests showed some malignant cells in your biopsy, which will require treatment. Malignant? Are malignant cells the good ones or the bad ones? I could tell by the tone of his voice that malignancies didn’t exactly bring you the winnings of a lottery ticket, but what did he mean? Did he mean cancer? I had only known two people with cancer, and they were older relatives of mine, my grandfather and my uncle, more than ten years ago each. I knew that lumps, tumors, or cysts—whatever you call them—were classified as either malignant or benign, but I didn’t know which was okay and which meant cancer. It just wasn’t on my radar screen. It was irrelevant to my young, healthy, active life. Treatment? What does that mean? Is it surgery? Or does it mean lots of other medical procedures that are terrifying, so the doctors don’t tell you the potentially far-reaching implications of them now, because you have enough to swallow today? My head was spinning.

So, I queried, "Dr. Nowak, does this mean I have c-c-c-c-cancer?" And he responded, Yes, unfortunately it does. Why don’t you come see me tomorrow morning when I have some time to sit with you and thoroughly discuss your alternatives. Tomorrow morning? Can I wait until then? Will I still be alive!? I was in shock. I managed to get out, Okay. What time? Then I put the phone down. Now the entire room was spinning. I was shaking and my heart dropped to my stomach. I called my mother. Mom, the biopsy is back and it shows some malignant cells. What??? she responded. "Mother, I have breast cancer," I replied, deliberately pronouncing each word. And as I hung up the phone on her because those were the only words I could muster, my meeting guest was standing at my office door. I looked up and said, "I have to cancel our meeting and go home. My doctor just told me I have cancer." And I picked up my coat to leave. Yes, malignant cells are the bad ones. And there, I had even said the c word three times. As I left the office, I knew that somehow my life had changed forever, but I was not yet quite sure how. All I knew was that I felt as if I had been smacked in the face by a tidal wave. Somehow, I would have to pick myself up and put myself back together again.

A NOTE FROM THE ONCOLOGIST

What’s Malignant, What’s Benign, and What’s Metastatic? Cell Growth Formation 101

Every cell in your body has a specific function. Brain cells transport neurological messages, stomach cells help digest and absorb food, and breast duct cells make milk. Occasionally, however, a change in the chromosome pattern in the DNA of a cell occurs—a mutation. This can be caused by an inherited defect, external factors such as radiation or environmental toxins, or a combination of the two. Usually, a mutation has no effect at all on the cell—it continues to do its job as programmed. Sometimes, the mutation is lethal to the cell, so the cell just dies and is washed out of your body (no big deal, we make billions of new cells every day).

Less often, the mutation leads to the transformation of the cell in such a way that it no longer performs its function (e.g., producing milk, telling your hand to move, absorbing your lunch), but rather reprograms itself to simply replicate or clone itself. A group of these cells is a tumor. A benign tumor does not invade or damage other parts of the body, while a malignant tumor will be fueled by and destroy surrounding tissue. In sum, a malignant breast tumor is composed of breast cells that have replicated themselves out of control, overtaking and destroying healthy cells and tissue in their wake.

If you are reading this book as someone with early-stage cancer, you are lucky that most likely, all the cancerous cells have remained grouped together in the original tumor site in the breast—that is, your cancer has remained local. Survival rates are very high for localized, early-stage cancer, and often you are cured by surgery alone. All the additional treatment you may undergo is preventative or adjuvant, just extra insurance in case microscopic cancerous cells have broken away from your tumor and moved to other parts of your body. When original clonal cells migrate from the breast organ to another place in your body and begin forming tumors, that is called a metastasis. When you hear of cancer metastasizing, it means that the cancer has spread to other organs—in the case of breast cancer, most commonly the lungs, bones, or liver—and is invading the healthy tissue of those organs.

There Are Many Roads Leading to Suspicious.

If you’re reading this book, unfortunately you may have realized that there are many roads which can lead your doctor to mutter something about suspicious——— (fill in the blank). It could be several alternatives: a lump you found yourself, either intentionally or accidentally; a thickening that your doctor found upon examination; or a mammogram where something caught the doctor’s attention. Whatever the pathway there, the next step is typically a biopsy. You must understand the role of the biopsy, and what information you can glean from it before considering your surgical options, if that is the appropriate route. Remember, early-stage cancer is very treatable, with extremely high survival rates. In a strange sort of way, think of yourself as lucky that