Why I wrote The New Generation Breast Cancer Book

I wrote this book not to add to the vast amount of information and number of books on breast cancer that are already out there. I wrote this book to fill what I perceived, based on what I see in my office every day, as a need for a specific kind of breast cancer book that did not exist.

The age of “TMI”

Thirty years ago, when our mothers and grandmothers were diagnosed, women didn’t even talk about “the big C.” Or if they did, they would literally whisper the word “cancer.” Twenty years ago, when I first entered the breast cancer field, access to information about breast cancer for the general public was still fairly limited. There was really no internet, only a few books on the market, and significantly fewer options for treatment.

computerFast-forward to today. There is no shortage of information out there if you are newly diagnosed with breast cancer. And it’s really the Internet that has definitely been the game changer, though not always in a good way. The internet, email, and social media have changed the way we do everything on a day to day basis, make travel reservations, communicate, even date (swipe left, swipe right- I have no idea what that even means), and it has definitely changed the world a woman and her family and friends face when she is diagnosed with breast cancer.

When a woman types the words “breast cancer” into her browser, she is faced with literally millions of pages. Women are  blogging and tweeting to chronicle their journeys through treatment; I have patients who send Instagrams from their chemo chair. And if you want to know about recovery from a mastectomy, just visit one of about 100 different breast cancer chat rooms online and you will get lots of input from many who have been through it.

So the problem isn’t access to information anymore. Instead, it’s too much information- too much information with no filter.  And keep in mind with breast cancer treatment there is no one-size-fits-all, so a woman newly diagnosed with breast cancer has no way of figuring out what, of the inundating information she is getting, is relevant to her particular case. And so here’s what I was seeing as the problem: Getting information is supposed to be empowering, but without the right guidance it can actually be overwhelming, having the opposite effect.

A real reason for hope

Add to that that women diagnosed with breast cancer over the last decade have had every reason to be optimistic about their outlook. The cure rate is the highest that it’s ever been, between 2000-2010 the death rate from breast cancer dropped almost 2% per year, so that the overall 5-year survival rate for breast cancer today is 90%.

For a woman with breast cancer, the overwhelming likelihood is that she will survive, and thrive. But for many women its very hard to hear this message of optimism against all the background noise that’s out there. I found that women were coming into my office with more doom and gloom than ever before, devastated by the scary stories they were reading on the internet, and overwhelmed and defeated before they even got started. And when they came into my office they had reams of internet print outs with post it notes flapping off of certain pages, highlighted in 3 different colors. They were all seeking guidance on what to read, and I didn’t have a great answer. It was the disconnect between the optimism and hope I was trying to instill based on the statistics and all the great treatment options we have to offer, and the fear and hopelessness that I was seeing more and more of, that made me think I should write something.  What I wanted for them was a book on breast cancer, one that provided guidance in an optimistic, calming tone, that was geared toward navigating diagnosis and treatment for this new generation: the age of TMI.

Advice every woman needs to hear

The book starts out with chapters on subjects that all women, not only those with breast cancer, might find informative: screening guidelines and the many controversies over mammography, ultrasound and MRI. It also defines who is at risk for breast cancer, what constitutes increased risk, and addresses options for reducing risk. There are chapters addressing genetic testing and discussions on whom should seek testing. There are chapters on the rare disease of male breast cancer, and life style factors that affect risk for breast cancer and overall health.

Elisa Port MD with breast cancer patient

But as the book takes a woman through the journey of breast cancer, I tried to do so with specific messages and insider’s advice that I think every woman with breast cancer needs to hear. These messages and pieces of advice represent what I hope will differentiate this book from what is already out there. For example, reinforced throughout the book, in discussions of every aspect of care is the message to always, always, always remember that no two cases are the same.

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, making 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.” So when a woman leaves my office, and her best friend starts asking, “how come your doctor didn’t order a PET scan, mine did,” and “how come you are having a lumpectomy? My doctor told me mastectomy was the only right choice,” that woman needs to remember that her friend’s treatment is not necessarily relevant to her’s. If a woman can insulate herself even a little from this type of background noise, she can avoid the doubt and questioning of the very sound choices she had made with her doctors for her particular case.

Reaching beyond my patients

Dr. Elisa Port in the operation roomMy final goal of writing the book had to do with helping women beyond those that I take care of personally. The Dubin Breast Center at Mount Sinai Hospital, in my opinion, is a model for the highest level of care a patient with breast cancer can get: all the aspects of care under one roof, and in a calming, caring, and personalized environment.  And there are top-notch breast centers across the country for women newly diagnosed with breast cancer. For the hundreds of thousands of women who cannot come to the Dubin Breast Center or a place like it, I hope this book gives women an idea of what they should seek out and strive for in the care that they receive.

In summary, I wrote to address the paradigm shift of information overload and how it has changed the experience of being diagnosed with breast cancer. I hope many people will read it and find it helpful, not only those with breast cancer but friends and family members seeking to support them. One in eight women- and some men too- will be diagnosed with breast cancer over their lifetimes, so we will all be affected either directly or indirectly in some way.

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