Turning a Positive Result into a Positive Decision

Approximately two minutes after I found out I was BRCA1 positive, I knew I would be planning a preventative surgery to help drastically lower the odds of my getting breast cancer. Knowing that my mother had had a clear mammogram just months before being diagnosed with Stage 2 cancer made me want to aggressively fight my odds of getting an especially aggressive mutation. I knew that vigilant monitoring through mammograms wasn't for me, and that I would lose sleep for weeks (or months) before each yearly exam. 

So surgery seemed like the best option. Or maybe the "breast" option?

But At the beginning of this journey, I had no idea how many options are available for mastectomy and reconstructive surgery. 

I first visited with three local surgeons. Each one of them kindly told me I was a good candidate for implants, and discouraged me from thinking about other alternatives. They gave me pamphlets to read, and I read them and tried to wrap my head around the idea of implants. Honestly, the thought of an implant didn’t sit very well with me. Mostly, I couldn't picture myself as a 70 year old woman with implants. When I asked the surgeons if I would need to replace the implants as my body aged, they said I would, as if that was a given, and did not seem to acknowledge the fact that it would be a HUGE inconvenience to have to go back for repeated surgeries. Upon further investigation, I found out that many women have complications with their implants, ranging from minor to major. I just didn’t feel confident going that route.

So I decided to widen my scope. I turned to the support group FORCE (Facing Our Risk of Cancer Empowered), created for those who are BRCA mutation positive. Through various message boards and posts on the FORCE website, I found out about the DIEP FLAP surgery, where they use your stomache tissue (sparing the abdominal muscles) for the breast reconstruction. It involves microsurgery and reattaching blood vessels, which of course sounds scary and intimidating, but the women who have braved these procedures, overall, seem MUCH happier than those who have opted for implants. Many FORCE members recommended two breast reconstructive  centers, one in New Orleans, and one in San Antonio, for this type of surgery.

I reached out to both centers, and got two very different responses. When I contacted the Center for Restorative Breast Surgery in New Orleans, I was asked for my contact information and was told I would get a call back... which never happened. When I contacted PRMA in San Antonio, I was immediately connected with the patient advocate, Courtney, who was incredibly welcoming, informative, and an absolute pleasure to speak with. She made what could have been a very uncomfortable, stressful conversation a very easy, very comfortable one. 

Based on surgeon recommendations I saw on the FORCE website, and my two very different experiences with New Orleans and San Antonio, I asked Courtney if I could set up a consultation with Dr. Minas Chrysopoulo at PRMA. We scheduled a Skype consultation in October. I expected to speak with Dr. C, as everyone calls him, for maybe ten minutes (that was about the length of time my other consultations had lasted). Instead, Dr. C spent at least 45 minutes to an hour talking to me about my decision and the DIEP FLAP surgery. I was so impressed with his patience, attention, and care. And he didn't talk to me like I was a PATIENT. He talked to me like I was a HUMAN BEING. One of the first things he asked me was whether or not I have children, and when I told him I have two little kids, ages 2 and 4, he said, "that BY FAR is going to be the biggest challenge of having this surgery." He got it. He understood the effect of this surgery, far beyond the borders of the operating room. And we had only been talking for two minutes. Dr. C also did everything he could to set realistic expectations for what I would go through, and what the outcome would be. He was transparent. He didn't romanticize anything. He was confident but humble. And by the end of the conversation, I knew I had found my surgeon.

Following the consultation was the long and anxiety provoking wait to hear whether my insurance would cover the surgery. I may have emailed PRMA six or six hundred times to check in on the status of the approval. But when the call finally came, and Courtney told me I was approved to schedule a date for the surgery, I truly felt like screaming "hallelujah!"

So I set my date for the surgery. I have gotten my insurance approval, gotten the ok from work (thank goodness for understanding employers!!), booked our flights, reserved a hotel, and rented a car. I have requested the help of my Eema, my stepmother, for the days following the surgery. I have had conversations with brave, beautiful women who have gone through this surgery and have generously offered to share their experiences. I have had a CTA scan in preparation for the surgery. I have had several conversations with lots of folks who only know about prophylactic mastectomies because of Angelina Jolie, which makes me more grateful to her for going public with her decision. I have scoured the Internet for packing tips, tips on how to prepare (mentally, physically, emotionally) for this surgery, tips on what to expect in the days following the surgery, and tips on where my husband can take the kids in San Antonio (though unfortunately a lot of attractions seem to be closed in the month of February). 

And now I am actively working on staying calm, staying healthy (a big challenge in this household of tiny children), getting organized, and becoming as well-informed as possible. And being a wife and mommy. And working full time.

 It's a lot, but I think I can handle it.