A Personal Reflection on Risk-Reducing Mastectomyby Founder Elizabeth Vivenzio
My uplifting message is that a proactive approach towards mastectomy can turn a harrowing situation into a liberating experience. I am here to tell you that my life is better for forging ahead with this brave decision and “embracing mastectomy.”
Findings that lead to my 2009 mastectomy were discovered during a breast reduction in 2008 when abnormal biopsy results were found. (All tissue removed during breast reduction surgery is routinely biopsied.) The results showed “severe, proliferative atypia with microcalcifications and borderline lesions” in both breasts (multifocal). The diagnosis of atypia is clinically significant because it is associated with a high probability of malignancy.
I tried the “wait-and-see” approach for nine months following this diagnosis. It was exhausting and gut-wrenching.
The kicker came during my 6-month follow-up, when an abnormal breast MRI lead to the scheduling of two MRI-guided core-needle biopsies, indicating yet two more sites of bilateral atypia. (The next step at this point would have been surgical excisions.) Having four sites of atypia placed me at the same risk as a BRCA gene carrier. Some medical studies stated a breast cancer risk of 50 percent, while other peer-reviewed research predicted over 80 percent. My genetic conditin is called Multiple Endocrine Neoplasia, and breast cancer a increased risk for me.
Proliferative lesions with atypia means there is excessive growth of cells which no longer appear normal. After four confirmed sites placed me at elevated risk, my oncologist at a major New York City teaching medical center began placing “prophylactic mastectomy“ on her list of risk-reduction recommendations for me. Oncologists see it all, I thought, so I took her perspective seriously.
The oncologist kept saying how “fortuitous” it was that we discovered this risk ahead of time. My husband and I reacted by scratching our heads and saying, “It is not fortuitous unless we do something about it!” It seemed to us that not taking proactive action would squander this “fortuitous” opportunity.
The Vicious Cycle of Vigilant Monitoring
What was the alternative to risk-reducing mastectomy? Vigilant follow-up monitoring they call it. Follow-up would have included breast MRIs every six months, which — since I already had widespread, bilateral proliferative atypia —- would have always shown etiology requiring MRI-guided core biopsies and surgical excisions. Then by the time you are done with that set of “follow-up” procedures…it starts all over again…time for the next six-month check. The pressures of these vexing realities are exhausting, nerve-wracking and painful!
That choice would, we felt, just be taking my breasts piece-by-piece. The reality of that lifestyle was too grueling to bear. The constant anxiety through those diagnostic tests seemed like waiting for the other shoe to drop…or, more specifically, a cancer cell to be detected. Then we would have to see if the cancer had metastasized, possibly have a mastectomy anyway, and have to be evaluated for chemotherapy and/or radiation protocols. It goes on and on…not to mention the Tamoxifen decision, which I will not go into now. But, I digress…
Living with Uncertainty or Choosing Peace of Mind
Minus a couple of other details, that was the point when we looked at each other and knew what we had to do. Risk-reducing mastectomy was the choice for us. My wonderful, caring husband was so supportive. His endearing statements were: “Sexuality is NOT what your breasts are.” and “Having you by my side for decades to come is the most important thing to me…just the presence of you is the most alluring and sensuous thing about you.” Our core relationship transcends body parts.
The Script Changes…Women Physicians Supporting Mastectomy
An interesting thing happened once I began the dialogue with my doctors about considering risk-reducing mastectomy. The script changed, and they let their real feelings show. I am talking about their unparalleled support for my decision. Yes, my women physicians, both the surgeon and the oncologist, supported my choice. Their perspective comes from seeing both ends of the spectrum. They see the advanced stages of breast cancer, and they do not want to see another woman go through it.
As you know, most oncologists and breast surgeons will maintain an unbiased, middle of the road response when presenting options to very high-risk patients. They do not want to place any influence on your decision; this is something you must decide for yourself. However, once you express your serious consideration of mastectomy, the flood gates will open. They will then let you know how much they support this option (if you are lucky).
My oncologist said she “wholeheartedly” agreed with my decision to have a mastectomy. The word really resonated with me. I kept researching the definition for further clarification in my mind. Wholeheartedly means “with fervent belief.”
Risk-Reducing Mastectomy: A Liberating Choice
My breast surgeon told me several times, “If I were you, I would make the exact same decision.” She assured me that all the women she had treated with risk-reducing mastectomy told her they had no regrets. The overwhelming reaction, she reported, was total relief from the stress and anxiety.
That is why I call mastectomy a liberating choice. It is liberation from the follow-up alternative that I just described. That is, of course, if you proceed with proactive energy and confidence — confidence that you are still the person you always were, full of vim and vigor and living life to the fullest.
And, yes, if you were depressed before your breast woes, you will probably be depressed afterwards. But, unless you have a clinical depression that needs medical intervention, your attitude can play an important role in your healing and happiness quotient.
Moving Forward and Living Life!
Whatever your personal journey is or was, let’s get past the trauma and get on with the healing…and the rest of our lives. Healing our minds and our bodies, and then mindfully boosting our self-esteem.
You see, I don’t miss my boobs. I mourn their loss, and I celebrate their memory. But, I also celebrate my freedom from the world of medical follow-up and high-risk anxiety. I am just working hard on my self-confidence. And nothing is sexier than confidence!
Thanks for stopping by my site and visiting for a while. I hope it provides solace for you and guides you to optimal healing.