Introduction
This book is a crisis manual for women who are newly diagnosed with breast cancer. It is the seventh edition of The Breast Cancer Survival Manual, which I have written over the past twenty-five years. The really good news is that the vast majority of women who read this edition of the Survival Manual will be cured of breast cancer! This outcome is much more likely than it was twenty-five years ago because of early diagnosis and new, more effective, and less toxic treatments.
However, breast cancer is still a crisis, and this manual is an attempt to put into words what we do on a daily basis, which is help women who are newly diagnosed understand what they are up against and develop a plan to overcome this obstacle—and, I would even say, achieve a cure.
When women receive the life-threatening and life-altering diagnosis of breast cancer, we ask them to become educated immediately so that they can participate in making critical treatment decisions. We ask this at a time when most are experiencing fear, panic, and disbelief. Regardless of your prior knowledge about the disease or your age or life situation, no one is immune to a natural sense of urgency and fear.
Women probably experience a sense of urgency because they have a perception of breast cancer that is out-of-date: before the 1970s, the one-stage mastectomy, or removal of the entire breast including muscles and lymph nodes (a radical mastectomy), was the only option. With the discovery of a breast lump, surgeons had their patients in the operating room within hours. There was no preoperative workup in those days. If a woman awoke with pain and heavy bandages, she knew it was cancer.
Significant progress has been made since that time. Breast cancer can present as a lump, but more often it presents as an abnormal mammogram before any lump can be felt or noticed. The diagnosis is made by a needle biopsy, where cells are removed from the breast and analyzed. If the diagnosis is cancer, there is time—yes, time—to become knowledgeable and prepared, to request second opinions and develop a treatment plan, and to gather together your treatment team.
We have come a long way from the one-step, one-size-fits-all mastectomy. Today every woman’s situation is unique, based on how the cancer looks under the microscope, the size of the tumor, and whether cancer cells have spread to the lymph nodes. We determine if the cancer has cell surface receptors for hormones and growth factors. We are even beginning to look at the mutations in the DNA of the cancer cells. And then there is the woman herself—her age, health, and life situation. Often, surgery is not the first step. Genetic testing may be used to help assess future risks and guide decisions about different treatment options. Chemotherapy or hormone therapy may be used to shrink the tumor before undergoing surgery. The goal of individualized treatment strategies is to achieve a cure with the least amount of side effects. It is important to develop a treatment plan that does not burn any bridges that would be difficult to repair in the future, eliminating other courses of action that could be employed later.
When I say that you have time, I know you are thinking, How much time? I usually tell patients that they have many weeks to learn about their specific disease and develop an individualized treatment plan. You will learn in chapter 1 that the cancer has probably been in your body for several years by the time of diagnosis and that days or weeks are not critical to your survival. The important thing is to choose the correct treatments for local and systemic management and decide how the therapies will be sequenced.
I have been helping women plan and manage their breast care for over thirty years. When it became clear that the treatment of breast cancer involved a number of different specialties working together, my dream was to create a center where all breast-dedicated specialists could come together with a single focus: to cure women who have breast cancer. And so this dream became reality twenty-five years ago, when Breastlink was born.
The old method of treating breast cancer patients is what I call the sequential method. A woman with cancer would see a succession of independent doctors, usually beginning with the surgeon, often a general surgeon. Each physician does what she or he is trained to do but without coordinating with the rest of the medical team. The surgeon operates, the radiation oncologist provides radiation treatment, and the medical oncologist administers chemotherapy. This sequential approach is not well coordinated. In fact, it is common for the physicians to have minimal communication with each other. The optimal approach is collaborative, with multiple breast cancer specialists working together to achieve the best outcome for each woman.
Since the first edition of The Breast Cancer Survival Manual came out twenty-plus years ago, 90 percent of the information regarding diagnosis and treatment has changed. One of my concerns for recently diagnosed women is that they may consult a physician who does not specialize in breast cancer or who works alone and does not stay completely current with the rapid advancements in research and discoveries that will most benefit breast cancer patients. This is why, even if you are feeling tremendous urgency to start treatment, it is a good idea to take time to become educated and to consider obtaining a comprehensive second opinion. And it is why I have felt compelled to update the manual regularly, now publishing this seventh edition with the latest research incorporated.
At our centers, we are fortunate to have physician specialists who are dedicated to treating women with breast cancer. Once a breast cancer has been diagnosed and we have collected all the necessary images and pathologic results from the biopsies, our team meets to discuss each woman’s unique situation and to develop the appropriate treatment plan. Each of our centers has a weekly meeting with all team members, including the breast radiologist, pathologist, breast surgeon, plastic surgeon, radiation oncologist, medical oncologist, and social worker, as well as members of the clinical research and genetics teams.
New patient cases are presented to the treatment team at these weekly meetings, and a thorough discussion leads to development of the individualized treatment plan. In addition, eligibility for research protocols is evaluated. The individual plan is then presented to the patient and her personal support team by the surgeon or oncologist or both. The discussion can be recorded so that we can go back and review it at a later date, if desired. We review treatment options, the sequencing of treatments, and timelines. At this point a patient may want to take our recommendations to an outside institution or medical group for confirmation or a second opinion, which is something that we completely support.
A woman’s case may be presented to the treatment planning conference a second time once surgery is completed or after a course of hormonal or chemotherapy has been given. The treatment plan may be modified based on new developments.
It would be a tremendous mistake to treat a breast cancer case without considering the woman herself. A woman’s age, hormone status, general health, emotional support, sexuality, immune system, and psychological and spiritual well-being are all extremely important in planning her treatment. Because traditional medicine often neglects treating the whole person, many women seek complementary therapy outside mainstream medicine. At Breastlink, we support a woman’s desire to search for comprehensive care and we help wherever we can, often with referrals for psychotherapy, physical therapy, yoga, or existential therapy (mindfulness). Our centers also provide access to nutrition counseling and maintain active volunteer and patient support groups.
We believe complementary care is helpful and supportive to the work we do. Our main task, however, is to cure cancer with the best scientifically proven methods available. In recent years, the field has gotten much more complicated—and also exciting. New discoveries about the human genome allow us to identify mutations that are responsible for and influence cancer. There are more tests, more drugs, and more clinical trials under way than ever before. This book is not designed to teach everything that is known about breast cancer; rather, it is a manual for patients that provides a framework for where we are today and what is likely to come in the future.
In chapter 1, we begin the book with basic information about breast cancer. What is the difference between a normal cell and a cancer cell? We will show you the anatomy of the breast and the microstructures where the first cell mutates. Once a cell mutates and becomes cancerous, it can remain contained in the milk duct—what we call in situ—or become invasive and spread beyond the milk duct. We will also discuss growth rates and how cancer spreads into the lymphatic system and blood.
With the basics clarified, in chapter 2 we help you begin your journey. We call this chapter “The Launching Pad.” My plan is to help you understand the nature and biology of your specific cancer and how to obtain optimal care. In today’s world, where knowledge is power, you will have the confidence to find the right treatment team and, in partnership with them, make the best treatment decisions for you. You will learn how to find the best treatment team, gather and track your records, and obtain a second opinion. We will also explore the current health care systems and how best to navigate them.
Chapter 3 is devoted to our recent progress in understanding the genomic basis of breast cancer. With this knowledge targeted therapies have been developed that aim directly at cancer-causing gene mutations. We are leaving the past era of toxic chemotherapies and entering a new era of precision medicine.
Chapter 4 explains the new genomic classification of invasive breast cancer and will allow you to understand your breast cancer type. This is critical because modern treatment is based on the genomic type of your cancer. Chapter 5 helps you understand the pathology reports of your biopsy and breast surgery. This chapter will further help you understand which cancer subtype you fall into: Luminal A, Luminal B, HER2-positive, or triple-negative.
Chapters 6 and 7 are overviews of the two main breast cancer treatment paths: local control (surgery and radiation) and systemic control (chemicals, drugs, hormones, and targeted molecules). I also discuss the sequencing of the treatments because there has been a trend in recent years toward providing systemic therapy before undertaking local control. In the chapter on local control, we discuss the role of reconstructive surgery for patients receiving both mastectomy and partial mastectomy, which we refer to as wide local excision (WLE).
Chapter 8 is devoted to the earliest form of breast cancer, ductal carcinoma in situ (DCIS). This preinvasive breast cancer accounts for about 20 percent of newly diagnosed cases. It is managed with local control, and the cure rate approaches 100 percent. If you have this early form of breast cancer, you can avoid the chapters on the treatment of invasive breast cancer.
The next three chapters are devoted to the treatment of the invasive breast cancers. Chapter 9 concerns treatment of the hormone-positive Luminal breast cancers. Chapter 10 covers treatment of the HER2-positive type, and chapter 11 discusses the triple-negative type. This is a departure from the prior editions of this manual because therapies are now more specifically directed at each subtype based on emerging scientific discoveries and clinical research. When we utilize a more tailored approach, we can avoid unnecessary treatments and use new, less toxic options.
Chapter 12 deals with the genetic predisposition of developing breast cancer. Approximately 10 percent of women inherit a gene from their mother or father that greatly increases the risk of breast cancer. This chapter will help you understand if you might fall into this group and if you should have genetic testing. Since the last edition, multiple genes have been discovered that convey increased risk. This is important for treatment planning, and there are new drugs that specifically target women who have a genetically related breast cancer.
Chapter 13 is about nutrition and healthy lifestyle. We will talk about the concept of prehabilitation in preparation for treatment, as well as dietary supplements and proper nutrition during treatment and after. You will almost certainly be inundated with information and recommendations from well-meaning sources about what to eat and which supplements to take, especially if you search the Internet or attend support groups. This chapter will help you put all of that advice into perspective.
Chapter 14 is about breast cancer research and the clinical trial process. It may help you determine if you are eligible and interested in participating in a research trial. Chapter 15 is about life after breast cancer and becoming a survivor. It will help you create an ongoing health care plan based on this new development in your life.
It is our hope that this manual will be helpful to you during a difficult period. Over the past twenty-five years, our medical practice has been devoted to women with breast cancer, and we have seen the positive effects of patient participation in forming treatment plans. Since more and more physicians today are asking for their patients’ input on important decisions regarding treatment, having proper preparation will empower you to become an informed participant in the decision-making process, which is invaluable, given that most women fear their recommended therapy could be inadequate.
Of equal concern, however, is overtreatment. Many women are being overtreated without understanding the true risks, benefits, and appropriateness of the therapy they receive. We hope to alleviate the fear of under- or overtreatment by clearly describing all the options available to you, which you can discuss with your doctors, and by directing you to informational resources.
The main objective of this book is to educate you about breast cancer and to give you some control over what may now seem like chaos. Information is critical and constantly changing. You have access to the latest information on breast cancer diagnosis and treatment through numerous resources, including your medical team, support groups, a wide variety of printed material, and the Internet; see the Resources section at the back of the book for a number of important websites.
We recommend that you use this manual as your breast cancer treatment workbook. Keep notes and highlight important information. As we describe in chapter 2, you may want to begin tracking your personal health history by collecting and managing copies of your medical records. This can be accomplished using a three-ring binder or your computer. There are several personal health record apps available on the Internet, and you can select the one best for you.
Whether you skim The Breast Cancer Survival Manual once or it never leaves your side throughout treatment, we hope it will inform and empower you, helping you receive the breast cancer treatment and care that is right for you during this challenging time in your life.
copyright © 2023 by John S. Link, M.D., and Nancy Link, R.D.N.