Bilateral Prophylactic Mastectomy

 

Bilateral Prophylactic Mastectomy ~ Is it Right for You?

When I read an article about BPM posted on Facebook by my reconstruction surgeon I knew immediately what the letters stood for and so do those in the BRCA and cancer community. Out of pure curiosity I searched on the internet the “meaning of BPM” without adding “medical” to the search. You get some interesting as well as hilarious results: British Prime Minister, Beam Position Monitor, Business Performance Management, Blood Pressure Monitor, Beats per Minute and my favorite, Butt Pumping Music!

The Angelina Effect

Bilateral prophylactic mastectomy became a popular news topic after Angelina Jolie shared that she reduced her risk by nearly 90% of ever getting breast cancer because of choosing a BPM. She tested positive for the BRCA1 gene mutation and her mother died of ovarian cancer. I wrote a previous blog on this and completely understand why she made the decision. But, I am a two time breast cancer survivor and wouldn’t wish this disease on anyone. I get why women choose to do it but it is an enormous decision to make on so many levels.

girl with blue eyeMy Decision was Dictated to Me

My decision to have a mastectomy with delayed reconstruction was more or less dictated to me by a returning cancer from my first diagnosis as well as a different kind of cancer in the other breast for my 2nd diagnosis.  It was time to remove the vessels that carried the disease that came back a second time.

My Friends with BRCA Gene Mutations

I want to tell you about two friends I have met along the way who didn’t go through the same thought process that I did. Neither one of them had cancer. They both tested positive for the BRCA gene and watched family members die of cancer, one her mother and the other her sister. These were both young women. One had just recently been married with the hope of sharing the future with her husband and all they had planned together. The other woman, also young and married, had two small children. She wanted to be there for them and did not want them to go through the same anguish she did when she watched her mother die of cancer.

Our Uncanny Lives

I met them both through the surgical group that we all traveled to for our surgeries.  In  fact, we all had the same surgeon perform our DIEP flap procedures. The cross-over in our lives, uncanny though it is, had a huge impact on me. The stories we shared and the strength I gained from both women has endeared me to them because of the decisions they made. But here’s the interesting part. We all three live in different states and are quite spread out geographically. That did not matter at all. I have often referred to these friendships as an “unintended sisterhood”. We understood each other from the moment we said our first hellos on the phone.

Kathryn

Coincidentally, Kathryn, whose story you can watch here, had her phase 1 surgery very near the time I had my mastectomy.  She had her phase 2 revision surgery just a week before I had my phase 1 surgery. Kathryn and her husbancd were still in town because it was over the Thanksgiving holiday timeframe.  She and her husband were kind enough to come visit me in the hospital and bring me flowers before they flew back home. I can’t tell you what that meant to me, even in my drug-induced, bad hair, swollen and tired state. I will never forget that act of kindness.

Dvora

Dvora had her phase 1 surgery almost two months after my phase 1 surgery. I had just spoken to her via emails and text but her story had great impact on me as did Kathryn’s. I was just going through phase 1 when I was first introduced to Dvora.  I texted her when I could during my recovery to let her know how the phase 1 process was going.  But this I remember quite vividly, and have never shared this with her. I was lying in bed one evening in the vacation rental we were staying in the week I left the hospital after my phase 1. I read a message she sent me as we chatted back and forth. It was late at night and I was having a difficult time sleeping. As I read her message tears began streaming down my face. I’m sure I was exhausted and probably a bit uncomfortable but I was so moved by what she was sharing with me. She spoke of her small children and the need to want to be there for them. I have two grown sons who I adore and cherish. I just couldn’t imagine going through this when they were young.  The anguish they experienced as adult men hearing I had cancer again was hard enough.  How unfair this disease seems to be. The unexpected decisions we each had to make as women to try and move beyond this disease was unplanned and unthinkable.

Parallels

All three of us had mastectomies and reconstruction for seemingly different reasons but in actuality the reasons parallel in so very many ways. We all had loved ones who we had a burning desire to be there for. We all had lives, unfulfilled and full of promise and purpose that we did not want interrupted or ended because of cancer.

Not An Easy Decision

Having a bilateral prophylactic mastectomy or reconstruction is not an easy decision. It’s not for everyone and the decision is as personal and unique as each of us.  Did we want to have surgery and all that comes with it; financial burdens, discomfort, recovery, time off work, the burden of asking loved ones to care for us, the travel, adjusting to our new bodies? The answer was likely many times no, but we were all warriors in our decision. We did our “due diligence”, as Kathryn stated in her video. We took the time needed to make this difficult decision and we all found someone we knew to be the best surgeon for us to perform our procedure. We knew the risk because we were told. We suffered side effects from the surgery but we got through it by leaning on each other.

Perhaps one of the best things to come out of this experience was the friendships gained. There is never any pause in a text, email or phone conversation we have. We just know. We know what difficulties we have been through. We know we are all on the path to healing and being able to move beyond cancer.  We are all grateful to Dr. Chrysopoulo, Courtney and PRMA for the support they showed each of us as we made this difficult decision.

unintended sisterhoodWe embrace our unintended sisterhood.

Disclaimer

References made to my surgical group, surgeon and healthcare team are made because they are aligned with my values and met my criterion after I did research of their practices and success rates. Any other healthcare provider that displays the same skill, compassion education and outreach to patients will be given consideration and recognition on this website.  The information contained on this website is not a substitute for or should be construed as medical advice. Please consult a licensed physician for medical advice.

2 thoughts on “Bilateral Prophylactic Mastectomy

  1. Kathryn

    I guess one thing I never shared with you was how much it meant to me to be able to visit you at the hospital that day. You were/are so incredibly strong and I’m so thankful our paths merged. It was really so healing to go through this together. I mean, we aren’t alone in this by any means, but to actually have close connections with kindred spirits and warriors has been beyond what I expected and so wonderful. It helps heal the soul. Love to you my friend.

    • Terri Post author

      Such a kind comment, Kathryn. It brought tears to my eyes. I like “kindred spirit warriors”. Love and healing to you!!

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