Excerpted from The New Generation Breast Cancer Book ($11; amazon.com) by Elisa Port, M.D. Copyright © 2015 by Elisa Port, M.D. Excerpted by permission of Ballantine Books, a division of Random House LLC. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
The last feeling you have when you’re told that you—or someone you love—has breast cancer? Lucky.
And though it feels like it’s so common—one in three of all new cancer cases diagnosed each year in women is a breast cancer—the notion that you’ll have lots of company offers little comfort.
But here’s the reality: if you have been diagnosed with breast cancer, you have every reason to be optimistic. At no point in history has the survival rate from breast cancer been better: overall survival from breast cancer now approaches 90 percent. Which means that if you’re diagnosed with breast cancer, chances are you will survive and thrive. Even more heartening is that over the last decade the death rate from breast cancer has dropped significantly each year, and that trend continues strongly.
Perhaps you’ve heard that, thanks to mammograms and early detection, if you are diagnosed with breast cancer today, it will most likely be early stage, which is extremely treatable and curable. And you may know that even for women diagnosed at more advanced stages, there are a growing number of cutting-edge treatment options available, with more on the way each year. But what you may not have heard is that for everyone, we are using less invasive surgery and treatments while still achieving better outcomes, and offering more options for reconstruction than ever before.
All this is the good news. The bad news is that it can be hard for women to hear this message of optimism against all the background noise.
Here are a few key pieces of advice and strategy. I will discuss these ideas and themes throughout this book, but to get you oriented and started on your fact gathering and decision making, these are the most important things you need to do at the outset:
1. Find the right team.
Breast cancer care is multidisciplinary, which means that different doctors from different disciplines (surgery, medicine, radiation, plastic surgery, and others) may be involved in different aspects of your care. And just to make it potentially more complicated, the number and types of different doctors and specialists that may be involved with your care will vary from person to person and from case to case. Not all women need to see all these different types of doctors. That’s why navigating your path through breast cancer can be particularly confusing and overwhelming, but with the right guidance it’s not. To start, it’s important to know that almost all treatment for breast cancer is sequential. For example, if it’s determined that you’ll need surgery, chemotherapy, and radiation, you’ll get these treatments one after the other, not at the same time, and therefore will have a sequence of different doctors running the show at different points in the course of your care. Who comes first? How do you make your way from one doctor to the next? Starting in chapter 4, you will learn about the order in which you will be likely to meet and interface with the members of your treatment team—including surgeon, plastic surgeon, medical oncologist, radiologist, and others—because even at the outset, when you’ve just been diagnosed, you’ll want to assemble a team that you feel confident and comfortable with. I’ll explain how.
2. Do everything you can to see doctors who specialize in breast cancer.
When patients are taken care of by doctors in centers that treat more cancer—known as high-volume centers—the results are better. In one study investigating breast surgery outcomes related to volume, only 7 percent of surgeons met the criteria for performing a “high volume” of breast surgery (more than fifty cases per year), and only 25 percent of patients had their surgery performed by a high-volume breast surgeon. The other 75 percent had surgery with a medium-to low-volume surgeon, many of whom performed fewer than two breast procedures per month. Here’s why that matters: those patients who went to high-volume breast surgeons were significantly more likely to be offered and receive the most advanced breast surgery options, and thus better treatment.* It makes sense: the more experience someone has regularly performing a task—whether it’s a haircut, a business deal, or a particular type of surgery—the higher likelihood of a better result. This is particularly true for breast cancer care today. With all the advances that have already been made, all the different treatment options out there, and more progress occurring each year, there is so much to know and so much to keep current on when it comes to breast cancer (you should see the stack of medical journals and publications on my nightstand). So if at all possible, avoid doctors who “dabble” in breast cancer care as part of their practice. The doctor who dabbles, treating only a few patients per month or even per year, may not have the up-to-date knowledge base to provide the best recommendations for treatment. For most doctors, high volume is usually achieved by becoming a specialist. A specialist is someone who, after receiving general training, goes on to get additional, advanced training in one specific area, or someone who chooses to focus his or her practice on one particular disease or organ system. So breast cancer care is best provided by specialists who have chosen to focus only on breast cancer in all its forms and all its treatments. With each member of the team, if at all possible, it’ll be key to find a specialist: someone who focuses primarily or completely on breast cancer within his or her particular field. So a breast radiologist spends most of his or her time looking at mammograms and all of the other imaging studies related to diagnosing breast cancer. A breast surgeon is a surgeon who devotes most if not all of his or her practice to performing breast surgery. Seeking out high-volume specialists is one way to stack the odds in your favor for getting the best breast cancer care.
3. Along the way, make sure you choose doctors you feel you can work with to make decisions.
When you are diagnosed with breast cancer, you will have many choices to make: Lumpectomy or mastectomy? Chemotherapy or no chemotherapy? What about additional treatments? And so many more. More than with any other disease type, decision making in breast cancer care is often both medical and personal. As I frequently tell patients, “I may be the expert in cancer, but you are the expert in you.” And because we’re talking about an area of a woman’s anatomy that is both extremely visible and very personal (and often an essential part of her sense of herself as woman), there’s a huge amount at stake. When you get the information you need provided by the right specialists, you can feel calm and optimistic, which in turn will maximize your chances of making the best decisions, for now and for your future.
4. Know that it’s not an emergency.
It’s hard not to imagine that cancer is growing and spreading by the minute, the hour, and the day, and most women and their families believe that when you are diagnosed with breast cancer, time is of the essence. It’s important to know that this is not how cancer works. You may be surprised to learn that even a cancer that seems to have just “popped up out of nowhere” has grown over the course of months to years. With rare exceptions, a new breast cancer diagnosis is not a medical emergency, so it’s okay to take a deep breath and allow yourself some time to formulate a plan. Don’t feel desperate to get in to see the first doctor who will give you an appointment; it is certainly safe to wait days or weeks to get to the right doctors in the right centers.
5. Always, always, always remember that no two cases are the same.
The only way to determine what’s right for you is to arm yourself with the facts, discuss them with a doctor you trust, and then listen to your own voice above all. With breast cancer, every case is different. And even two women who seem to have the same diagnosis may have cases that differ in subtle ways that make a big difference in treatment options or recommendations. Because of this, there is a limit to what one can learn about her disease from the Internet, an article, or even a friend who seems to have “exactly the same thing.” I think it is safe to say that when it comes to breast cancer, one size does not fit all—it doesn’t even fit most. As one of my patients, Jane, said to me relatively soon after her diagnosis, “If I hear one more person tell me what she would do if she were me, I am going to lose it! How does anyone know what they would do if they were in my situation? And even if they were in the same situation, they’re not me!” So in this book, you will learn how to get the facts that pertain to you and your case, which will enable and empower you to move ahead with your care.
6. Focus on what matters and tune out the background noise.
How do you do that when there is so much information out there? It’s unrealistic to expect to insulate yourself completely from the onslaught of information and advice headed your way, but in this book you will learn strategies for how to maintain optimism and a positive outlook in the face of the storm. How do you do that? By learning to let some of the information roll off you, by differentiating fact from fiction, and by getting a preview of the many myths out there related to breast cancer, and understanding how to dispel them. And if you can succeed at the first, second, and third items on this list—finding the right team, making sure your doctors are specialists, and having medical providers you’re comfortable with—the number of questions you need to research on your own should be reduced, and you will have reliable, trusted specialists.