One month ago, I made the choice to remove my healthy breasts, taking my risk of developing breast cancer from close to 90% to below general population level. I researched for 3 years before that surgery and had a very well developed plan, which thankfully did not backfire (at least yet). In the weeks since my surgery, I feel I need to share my personal path.
I have one message for other women wearing these shoes and for my friends/family who were worried: This does not have to be so bad.
Many people have been visibly and vocally surprised at how well I've been doing physically. I hear 'You look great' with surprise in the person's voice more times than I can recall. And I agree. I'm surprised, too, but pleasantly so. Because it is going according to plan.
I'm a big believer in each of us choosing our own path, but here's mine and I can now stand at the almost-end of my path and proudly say I'm happy with each choice thus far.
Step 1: Find the support you need; join at least one group -- online, in-person or both -- where you can ask questions and see others' journeys.
It was this step where I saw the tough side of prophylactic mastectomies -- the complications and less-than-desirable outcomes, but I also saw some amazing results. I found that 75% of the time I inquired about someone's results, I was receiving the same surgeons' names. Noted.
One of my in-person support networks also hosts an annual conference where I was able to see those same results, literally feel them if I wanted to. I knew then that this was the route I wanted to take, if I could.
Step 2: Research, research, research.
The results I wanted were a very specific procedure and I needed to know it was safe, not only visually appealing.
My surgeons (Andrew Ashikari and Andrew Salzberg) use a direct-to-implant procedure in which they utilize dermal matrix as a sling for the implant, eliminating the need for the traditional expander process and the secondary exchange for permanent implants. The incisions are made under the breast, sparing the nipple and giving a fairly "normal" appearance to the breasts. And I say that knowing that most of the results I saw would never be suspected as being mastectomies if someone didn't know.
Here's a YouTube video on the Alloderm:
And Before/Afters from my team: http://www.nygplasticsurgery.com/photos/?procedure=directtoimplant
At the same conference above, I saw Dr. Ashikari speak, showing MRI images to prove his technique eliminates as much tissue as the more traditional route. I had the chance to ask Dr. Salzberg about breastfeeding and the need for time between weaning and surgery. I left with a mini consult and very specific questions that I researched to death. What were the percentage increases of cancer occurring in keeping my nipples? How many of the patients in my support groups who used these docs had complications?
I met up with local patients, saw more results, talked to one girl on the phone for 3 hours.
Step 3: Put your plan into motion.
For me, this meant have a baby, breastfeed for 6 months, wean, get a clean MRI and work my body into pre-op shape. I had scares. I had my first biopsy. I freaked out that my plan was going to be pushed off the tracks. And I got lucky. There's no other explanation. While I may still have been able to go through with this surgery, I may have had to endure chemo or radiation or something else.
And I had to call for my real consult. Luckily their staffs are amazing. So amazing. They helped me organize my appointments, work with insurance, etc. But making that first call was probably the hardest thing for me. At that consult, I felt both surgeons sold me the surgery. They explained why they developed it, had confidence in my build and health, discussed any potential complications. The conversation was a priority. My results were a priority.
Step 4: Distract yourself.
I threw myself into work, threw a Bye Bye Boobs party, chopped off all my hair (purposefully so I didn't have to rely on my husband to do it) and went to Disney World. I know it sounds crazy, but it totally worked for me. I had the most amazing time with my family on our little vacation. I didn't have time to dwell on something I'd already thought about for years and get myself worked up.
Step 5: Show up.
Probably the second hardest part. But it honestly helped to drive 2 hours away, know my kids were in amazing hands and so was I.
Still, an emotional mess totally ensued the night before.
Step 6: Take the help. ALL the help.
I am lucky enough to be married to a man who has dealt with a mastectomy before. He understood the drains and all the help I would need, maybe more than I did. So find your person who can deal with all of that. Let that person be with you. Because after the surgery, you need to rest and know someone is there for you when you need it most.
I had my drains for 6 days. I don't know if it's because of the procedure or my own body composition, but my surgeons were fairly certain my drains would be out within the week. And for that, I am very grateful.
And when you come home, remember that people really do want to help when they offer. Tell them what you need. My village was flipping amazing with food, child care and overall love.
Step 7: Laugh. Cry. Love. Don't sneeze.
I had to remember to laugh. I used social media (snapchat, FTW) to help me laugh. My friends and husband had me laughing up until I was going into la la land.
I also had to let myself cry. Pity party of one happened a couple of times. And I know I'm lucky and I am happy with my results. But it's still bizarre. I still have no feeling in my breasts and won't for a long time or ever. It's still surreal. And I needed to grieve.
I hope I loved enough. I hope my friends and family know just how much I love them and appreciate all they did.
And sneezing sucks. Random thing no one told me.
So now I'm here, about to embark on 2017 and my new normal. I may never feel comfortable doing a push up or a plank (it feels like a ghost muscle grasping something invisible), but I will do them again. I'm still wearing a post-op bra 90% of the time and I hate it, but damn if my boobs don't look good even if I can't feel them. And given the alternative, I'm very happy with this new normal.
My girls have seen them and not blinked an eye. They don't see me as broken or even as in-progress. I'm still just mommy. And I want that forever.