The Surgery Details: Prophylactic Bilateral Mastectomy

I am beyond speechless for the words of support, prayers, connections and stories you all have shared with me. There are no words to describe my feelings as the emails continue to pour in from readers who have been encouraged to schedule their annual mammogram, start doing monthly self breast exams, look in to BRCA testing because of their family history and even one super brave mama faced with this same decision move forward with her procedure!

I am trying so hard to respond to the emails I’ve received but am so overwhelmed (in such a good way) with the sheer volume! Just know that even if you haven’t heard back from me I read every email, blog comment and Instagram comment and it has encouraged me more than you could possibly know.

I want to share a little bit more detail about the double mastectomy surgery, especially for those of you who are considering the procedure.

The date. First, we had to decide when it would be a good time to have the surgery after Thomas was born given the 6 week recovery time. We went through every scenario from combining my surgery with my maternity leave (doctors advised against that) to waiting until after the holidays were over. But the truth is there really is never a good time and I am more than ready to turn this page and get on with my life so we opted for the first available date that both of my surgeons were available. That brings us to October 27. And yes, my first thought when I got the call from the scheduler was “wait, will I be able to trick-or-treat with my babies?”

As for everything going on with Thomas, we obviously didn’t plan for that! After his cataracts diagnosis we deeply discussed putting the surgery off until 2016 but ultimately decided it was best to still move forward with the date. And thankfully we are past Thomas’ surgery hurdles and will have a week or so with contact experience under our belt before Matt has to do them solo for awhile. The eye doctor is also less than a mile from our house and we can walk in any time during business hours to get help with the contacts.

The surgeons. Picking both of my surgeons was a big decision (obviously). Not only do I want the best in Charlotte, it is important that the two surgeons work well together because they will be working on me at the same time.

I wanted the smartest, nerdiest and most experienced surgical oncologist I could find. From there we had the same requirements and more for my reconstructive surgeon. In addition, I wanted my reconstructive surgeon to specialize in well, reconstructive surgery (not just boob jobs)! Bonus points for Duke education.

Anytime I’ve told someone in the medical community who my surgeons are their response has been “oh yes! you have the absolute best duo!” I’m pretty sure everyone thinks they have the “best” doctors but I really truly believe mine are and I’ve been so happy with my decision so far.

The options. The amount of options (and decision trees that come with each option) was overwhelming and you can easily make yourself sick analyzing each one. We were peppered with so many difficult questions while finalizing the details of my surgery, many of which kept me up at night. Which procedure should I choose? How do I want my breasts to be reconstructed? Will I keep my nipples? These were not easy decisions. And not that I have boobs that would win any sort of contest, but all of a sudden I became very attached to them once the reality of losing them set in.

The final decision…a prophylactic bilateral mastectomy with nipple and skin sparing, tissue expanders and reconstruction.This requires two separate surgeries.

The nipples were the hardest (and most complicated) decision. I decided to keep ’em since my doctor said I’m a good candidate for a nipple-sparing mastectomy. This does however give me a 1% risk of getting cancer and there’s also a slight chance of nipple necrosis, which means they could die from the trauma and reduced blood flow immediately following surgery. Despite these risks, I had read and been warned that this type of surgery can be very psychologically damaging to a woman and this option still seemed more natural than the other options which included no nipples, prosthetic nipples or tattoo nipples. See what I mean about the decision trees that come with each option? Overwhelming.

The surgery. Very long story short, during the first surgery, the surgical oncologist will make an incision underneath the fold of my breasts and remove every bit of tissue (down to the dermis) in my chest. During this same time the reconstructive surgeon will sew in pockets of surgical mesh between my skin and chest muscle to hold tissue expanders. A breast tissue expander is an inflatable breast implant designed to stretch the skin and muscle to make room for a future, more permanent implant.

The reconstructive surgeon will then sew in 4 surgical drains. These drains consist of a small plastic reservoir bulb connected to about 4 feet of flexible drainage tubing. So I’ll have 4 drains hanging out of my chest that are about 3 feet long each. Their purpose is to remove fluid from the surgical wound through mild suction. From what I’ve been told the drains are the absolute worst part. I will literally have these suckers (no pun intended) hanging out of my chest for three to four weeks. Several times a day the fluid has to be measured and recorded until I hit a certain number required
for them to be removed. And Dr. Matt will have the lovely job of emptying them and cleaning them. For better or for worse, right?

The entire surgery should take between four and five hours and I’ll be in the hospital for one to two nights to recover.

After the drains are removed at the end of November I will visit my reconstructive surgeon every few weeks to slowly fill my expanders with saline. The tissue expanders have a tiny valve mechanism located inside the expander so the doctor can inject the salt-water solution to gradually fill the expander over several weeks or months. Thankfully the expanders will have some saline already in them during the first surgery so I won’t be completely flat when I leave the hospital. I’ve been told that the expanders feel ridiculously unnatural, uncomfortable when laying down and my breasts will feel (and look) rock solid. However, the perk (killin it with the boob puns) of expanders is that I don’t have to decide on my size up front. With each fill I get the opportunity to test drive the size and see if I want to keep going. After I’ve reached my desired size (TBD!) I have to wait 3 months to ensure the skin over my breasts has stretched enough before my second surgery to have the final implants put in. So, not an ordinary boob job; it’s much more complicated.

That’s a lot of information for today so I’ll leave it at that!