Deciding to have a double mastectomy when you don’t have cancer is a very difficult decision to make and even harder to explain. Many people are uninformed and think you are just overreacting or taking “drastic” measures. They think it means disfigurement or unnecessary risk. I didn’t feel like I was allowed to express any fear or anxiety and I felt tremendous guilt because, after all, it was my choice. I didn’t feel entitled to any sympathy. So the majority of my decision making process was done in my own head. Having a BRCA1 mutation, I felt like I had a ticking time bomb strapped to my chest, and no idea how much time was left or even if it had already exploded inside my body.
I was a part of the online BRCA community, so thankfully, I had some idea of what my options were. I had seen some really great results and some not so great. I scheduled a consultation with the best plastic surgeon available in my area, though her only option for reconstruction was implants. Someone told me that when trying to decide on a plastic surgeon, look at their shoes and office. She said if they wear nice shoes and have a fancy office, its a sign they are a perfectionist and thus, a quality surgeon. I didn’t think much about those things, until I was almost an hour and a half in to my appointment. This surgeon was not confident and she repeatedly told me I would likely have some complications and that it may take several surgeries to get decent results. She asked me twice if I was certain I wanted to “do this to myself.” Of course, I knew I needed to do this FOR myself, so I found myself gazing at her shoes and then at the walls, looking for hope. I was trying to convince myself it would work out, but the only thing that came to mind as I stared at her shoes was, old-fashioned. I left the appointment feeling defeated and frustrated.
I went home and began researching another option I had heard about, DIEP Flap reconstruction. For those who don’t know, DIEP Flap it is a type of breast reconstruction in which blood vessels called deep inferior epigastric perforators (DIEP), as well as the skin and fat connected to them, are removed from the lower abdomen and transferred to the chest to reconstruct a breast after mastectomy. I knew it would be a huge surgery with a lengthy recovery. I also knew it required highly experienced and qualified plastic/micro surgeons to get it right. There are a couple of places that are sort of the celebrities of the DIEP Flap world, PRMA in Texas is one. As I struggled with the logistics of traveling 16 hours away from my four young boys and a 6-8 week recovery, it seemed impossible. I even contemplated having the double mastectomy with no reconstruction, just so it was over with.
It was around this time that I came across a stranger on Facebook, who I now consider a dear friend. She had recently had delayed DIEP Flap reconstruction in Cincinnati, a mere hour and a half from my house! She described her incredible surgeons at Midwest Breast and Aesthetic Surgery and how happy she was with her results. I was so inspired by her trust in them, that I knew I had to at least give it a shot. I walked in for my appointment, the office wasn’t even their own. I remember sitting and waiting with my list of questions and binder full of medical records, feeling uncertain.
My breast surgeon, Dr. Jennifer Manders, came in first. I loved her instantly! She was so lovely and more reassuring in five minutes than my other two hour long appointment. She not only understood why I was “doing this to myself,” but more importantly, she was in great approval. Next, I saw Dr. Kocak. His confidence was palpable, as was the compassion from both of them. Informative and realistic, but fully certain I would be just fine. I believed in them from the start and I knew I could trust them with my life. I didn’t actually meet Dr. Tiwari until the day of my surgery, but the level of confidence and commitment is the same across the board. They are impressive on paper for sure, but the skill and care they provide are unparalleled. They replaced my fear with hope.
All of my questions were answered and all of my concerns put at ease. When I left, I felt like I could actually breathe for the first time in months and I never once had to look at their shoes!