Reconstruction after nipple sparing double mastectomy

I am writing this to pay it forward through realself as other reviews have been invaluable to me in this process. Earlier this year I found out I had breast cancer through a mammogram. Then learned I’m BRCA 1. Thankfully God had been preparing my mind for this day. I have a long family history of breast cancer, and I was not shocked by the news. I have thought for years that someday I would have to say goodbye to my breasts.

So after the news, I quickly decided on a nipple sparing double mastectomy. I only had about 2 weeks to research before my surgery at Rush in Chicago. Dr Claudia Perez (my oncologist who was also amazing) recommended me to Dr Shanaq to discuss reconstruction.

So I started my research, all day, everyday. I was SHOCKED to find out that complete numbness is common after DMX. I was way more concerned about this than the actual loss of breast (which can be reconstructed). I also learned that when doctors refer to a reconstructed breast as “feeling natural” they mean TO SOMEONE ELSE OR THROUGH TOUCHING WITH YOUR HAND! Like what? If I read a breast will “feel” normal I would think that means—to me. Reversing the “numbness” of the Skin and nipple is referred to as restoring SENSATION. Immediately my research shifted to “how to restore sensation” to the skin and nipple. My goals became:

1. Get rid of the cancer

2. Restore as mush sensation as possible

I read and read every study available on nerves, flap reconstruction, etc. One study even kept the nerve after the mastectomy, cleaned it and grafted it back to the nipple. I was a little unclear on options but had some ideas.

Then I had my appointment with Dr Shanaq. I was mentally prepared to be shot down, told I was crazy, told that nerve grafting wouldn’t work. But Dr Shanaq was AMAZING!! She was open to all my ideas. She said “sure! I can take a nerve off the shelf and graft it to your nipple. No problem. I’m a microsurgeon!” I asked “by off the shelf, you mean cadaver?” Yes she did. I was thrilled! She said chances of it working were 50/50. But hey, thats better than zero! I also discussed the use of the external suction device developed by Dr Kouhri. She was open to it. (I am a firm believer in cupping and figured this was just a bigger version).

So in the Spring of 2022 I went in for my surgery for double mastectomy and nerve grafting to the nipples. As I drove in I felt deep sadness for the loss of my breast that had served me so well. I nursed three children with an over abundance of milk and my breast had bounced back beautifully. I was a 34B and very happy with them. However, God had a different plan for my life and He gave me peace in my decision.

The recovery went well overall. However, The first few days my right nipple went completely black. Yikes! I was scared I would lose it! I remembered seeing some episodes of Botched where they used a hyperbaric oxygen chamber and leaches to restore blood flow. I dove into research in the midst of my tears. It was a Saturday so not much was open. Thankfully I found an oxygen chamber open for Sunday morning! Amazing! I was praising God for giving me this path. My doctor ok’d it and I did 2 treatments over the weekend. Then I found a local hospital with a chamber. My doc wrote a prescription and my insurance paid for ten days of 2 hour sessions. Right After every session I could see more and more pink returning to the nipple. So so thankful for that! I also think this sped up and improved my overall healing.

So now here I am. About 6 months has passed and I feel great. Everything healed well and I have about 50% sensation on the left side and 30% on the right side. I am still hopeful for more improvement as it can take up to a year+ for nerves to heal. Doc said to wait at least 6 months for nerve healing before any recon so now that phase begins!!

I looked at all options of reconstruction: implants, flaps, fat. I know some women are fine staying flat which is amazing, but I am not one if them. IMPLANTS: I decided against implants first because I have an autoimmune issue and am afraid of BII. Also because I don’t want to have to worry about more surgeries to replace the implants ten years down the line. FLAPS: I also decided this was not for me primarily due to the massive scars it creates elsewhere on the body. I don’t need a tummy tuck and don’t really want to mess with that. Sooo FAT TRANSFER: this is for me. I had always wanted lipo on my thighs to smooth things out. If i Can then use the fat to build breasts it’s a win-win! I consulted with three surgeons who focus on reconstruction with FAT ONLY. They were all very impressive. But ultimately I wanted to stay local. I decided to go back to Dr Shanaq. She was again wonderful and agreed to do the first round fat transfer even though this is not her specialty. I know this will take 3 or more rounds of transfer to build the breasts. I also ordered the EVE (external vacuum expander) from Dr Kouri in Miami. I did not consider him for the procedure bc after reading reviews, I don’t think my personality would fit with his. I had planned to use EVE for 3 weeks prior to my surgery. But my date was moved two weeks earlier. So I figured I’ll try it for a week anyway. None of the docs I consulted said it’s required but I figured I’d give it a shot.

So here I sit with huge suction cups in my very flat//concave breast. Fist surgery is next week!

This photo shows my nipple starting at 4 days after mastectomy and ending after 12 hyperbaric oxygen chamber sessions. The healing happened right before my eyes. Every session it got more pink. Both nipples and skin are healthy now.

Since I refuse to go about my day flat I am using PURLZ breast implant sizers all the time. I LOVE these things. They are meant for implant Sizing but I use them as breast replacements. They are soft bead filled bags with a small label of CC amount. I ordered 5 pair sizes 225-450. I wear them 24/7, even to work out. I throw them in the wash in a Lingerie bag and air dry.