Why I Wrote a Book on Triple-Negative Breast Cancer

What follows is a guest blog from Pat Prijatel. Pat is the creator of the Positives About Negative blog and the author of Surviving Triple-Negative Breast Cancer (to be published in autumn 2012),  both motivated by her own journey through triple-negative breast cancer.   She is a recognized authority on the magazine industry as co-author of The Magazine from Cover to Cover, now in its third edition.

As head of the magazine sequence at Drake University, she was an award-winner teacher, the first woman to become a full professor in the School of Journalism and Mass Communication, and the E.T. Meredith Distinguished Professor.   She was also the first director of the School of Journalism and founder of the E.T. Center for Magazine Studies.

Before I was diagnosed in 2005, I thought breast cancer was a one-disaster-fits-all disease.   I believed all breast cancers were fueled by estrogen, and that, as a 60-year-old woman who had never taken hormone replacement therapy, I was not at risk of breast cancer of any flavor.

My fear and confusion were magnified when doctors started talking about the fact that I had an especially dangerous form of breast cancer. (As though I had thought there was cancer that wasn’t dangerous.)

I hit the Internet and found medical journals that helped me understand what was going on in my body.  Hormone-negative breast cancer defied my expectations of the disease.  It does not play by the rules I considered normal.  I expected it to mostly affect postmenopausal women whose estrogen supplies were depleted.  Not so. As women age, they are more likely to get the more common form, hormone-positive.  Younger women get hormone-negative.   I thought all breast cancer responded to tamoxifen, but found that hormone-negative does not.

The medical books I pored through spent little time on hormone-negative. Still, up to 20 percent of all breast cancer patients—170,000 a year worldwide—have this disease.

So I wrote a book, Surviving Triple-Negative Breast Cancer, to be published this fall by Oxford University Press.  It is a more organized offshoot of my blog, Positives About Negative.

Things have changed drastically in terms of research since my diagnosis nearly six years ago. (Six years!)  Hormone-negative, especially triple-negative—estrogen-negative, progesterone-negative, and Her2/neu-negative breast cancer—is now a major area of medical research, which is yielding new treatments and prevention strategies.   The term triple-negative breast cancer first appeared in medical literature in 2005.  Since then, it has appeared in more than 600 different publications. So, those of us with this disease are now benefiting from a great deal of new information.  We’re no longer the wallflowers at the breast cancer prom.

The process of educating myself about this disease was difficult and time-consuming. I benefited from already knowing my way around a research paper, plus I had easy access to journals through the university library.  I began writing magazine articles about breast cancer, which allowed me to interview top researchers in the field, a serious payoff to my decision 40 years ago to become a journalist. But what about all the other women without the benefits I enjoyed, who didn’t have the advantage of that research?

 In my book, I explain and describe this disease through several lenses.  First is my story, which I regurgitate early on and use sparingly throughout the rest of the book.  Second are the stories of wonderful women throughout the United States—in their 20s, 30s, 40s, 50s, and 60s— who have fought this disease.  Several have been disease-free for decades, others for only a few years.   I try to present their stories honestly, showing that this can be a harsh disease and that fighting it is no picnic.  I focus on the fact that most women survive, but acknowledge that this disease can be a serious threat.  I have dedicated the book to the women I have met who have died from triple-negative.

Third is the research.  In most cases, I rely on articles published in peer-reviewed journals, such as the Journal of the American Medical Association, New England Journal of Medicine, Journal of Clinical Oncology, Annals of Internal Medicine, and Annals of Oncology. I use footnotes throughout; I have learned through my blog that my readers appreciate being able to go back to the original research.

I do not intend this to be a book on all aspects of cancer—just one that fills the gaps other books leave in our understanding of triple-negative and other forms of hormone-negative breast cancer.  I am not a scientist nor do I pretend to be one.  I have spent five years with my nose in this disease and I am sharing what I know, what I have experienced, and what others have experienced.  All medical information has been fact-checked and verified.

When I began this project, I was thoroughly intimidated by it and often asked myself why I was writing this book and not the people who have researched this disease.   But, I realized, no book exists, so somebody has to do it.  And, as I progressed, I realized that I had a unique and valuable perspective, as a woman who has dealt with this disease and as a journalist and educator.  I can infuse the book with the voices of this disease; I can show the who as well as the what of hormone-negative. I can look at it from all angles, the way a patient does. I know when clarification and expansion are necessary and when words such as aggressive and deadly need interpretation so they explain rather than frighten.  I can give readers a sense of control in addition to information.

My goal is to inform, educate, calm, encourage.  Through women’s stories I show that this disease can be beaten. Through research I show how.