When faced with a breast cancer diagnosis, one is confronted with a myriad of emotions – a flurry of thoughts and feelings course through our body including shock, fear, denial and deep grief. But before we have time to fully wrap our brain around this new reality, much less think straight, we are plunged into a massive sea of information-overload and challenging decision-making. Questions, research, doctor recommendations, and rapid learning about treatment and surgery options become a full-time job, culminating in one of the hardest determinations we will probably ever have to make: What is the best surgery and treatment protocol for me?
Several months ago, we stumbled across a fascinating read in the Wall Street Journal entitled, “Defying Doctors, More Women With Breast Cancer Choose Double Mastectomies.” The article profiles Chiara D’Agostino, a woman who was diagnosed with breast cancer in her left breast and whose doctor recommended a single mastectomy plus chemotherapy and radiation. The women in Chiara's support group disagreed with this treatment plan, however. They encouraged her to get a bilateral mastectomy in spite of the fact that her other breast was still healthy. Why? Because according to them, she would get better cosmetic results, and the more extensive surgery would reduce her chances of developing more breast cancer in the future.
We also experienced what doctors now refer to as the “Angelina effect.” In 2013, Angelina Jolie publicly announced that she was having a preventative double mastectomy after testing positive for BRCA1, a gene mutation that significantly increases one's chance of developing breast and ovarian cancers. In Jolie’s New York Times op-ed piece she stated, “I do not feel any less of a woman. I feel empowered that I made a strong choice that in no way diminishes my femininity.”
According to a 2015 analysis of the National Cancer Data Base, 30 percent of women ages 45 and under, opted for a double mastectomy when diagnosed with Stages 0 to 3 breast cancer.1
In addition, "the rate of women undergoing mastectomies increased 36 percent between 2005 and 2013, including a tripling of bilateral mastectomies. The increase occurred despite breast cancer rates remaining relatively unchanged.7 More recently, a 2017 study published in JAMA Surgery found that the increase is being driven in part by their surgeons – accounting for about 20 percent of the variation in rates of women removing both breasts.8
So, what does all this mean? Are we witnessing a double mastectomy rebellion? And are these extreme surgeries even warranted? Some doctors say that “even with a total mastectomy, breast tissue remains under the skin, so there’s a chance for recurrence. Women are making the decision based on incomplete information.”4
According to Dr. Laura J. Esserman, a breast cancer surgeon and researcher at University of California, San Francisco, having a double mastectomy doesn’t necessarily improve one’s chances of survival. In fact, in a large study published in JAMA Journal last year, comprised of 100,000 DCIS [Ductal Carcinoma In-Situ] or Stage 0 patients, one has the same chance of dying two decades after treatment following a double mastectomy as they do following a lumpectomy.5 Another study published online in the Journal of Clinical Oncology revealed that women don’t necessarily enjoy a big improvement in their quality of life following a double mastectomy either.6
At the end of the day, treatment decisions are truly individual, and it's important to take time, even in the wake of a diagnosis, to think them through. We often forget that amidst all the mayhem and anxiety, we have time to slow down and gather information. And personal comfort levels with pain, losing a body part, or living with the fear of recurrence are important aspects to consider. One size does not fit all, and the process of determining which surgery to undergo requires consultation with one (or more) surgeons and a deep heart-to-heart with oneself and one's family. As with many challenges in life, it's about trusting in our ability to make the best choice for our body, at that particular moment in time, and hopefully, living with no regrets.
"This is about living your life without looking over your shoulders." – Jennifer Finkelstein, breast cancer survivor