I realized as I was providing continued updates after my surgery and posting update articles on my website that many of my readers may not completely understand what it is I have had done to my body! Since this type of surgery has become more common, and since prophylactic surgeries to prevent cancer in general are on the rise, I wanted to take the time to explain it. I am not a doctor and do not provide medical advice, but I will explain to the best of my knowledge what happened to me and what I understand about the process.
In November 2024, I had what’s called a skin-sparing double mastectomy with immediate DIEP flap reconstruction. Sometimes, the mastectomy and reconstruction surgeries are separate, but mine were done in succession, as I will explain here.
Skin-sparing means that my nipples and breast tissue were removed while leaving the rest of the skin of my breasts intact. I wanted to have reconstruction (I did not want to be flat and I preferred not to have implants), and the new breasts would look more natural if the transplanted fat could be placed into the skin that was already there. I was able to choose this because I did not have cancer; some cancers are either too close to the skin or have invaded the skin, and the skin cannot always be saved. This is a benefit of having the surgery prophylactically.
To get technical, my breast surgeon cut circular holes around my areolas and removed the nipples and all of the breast tissue through those holes, which extends further than one might think. This makes space for the transplanted fat from my belly. No other incisions were made in my situation, so my scars up top are only those circles. Pretty impressive surgical skills if you asked me, and it reduced the chance of healing complications by minimizing incisions.
The mastectomy is the first part of the surgery, and I was told it usually takes 45-60 minutes, meaning that’s the “easy” part. Apparently, it’s much more complicated to put someone back together than it is to take them apart. During my surgery, a sentinel node biopsy was done. Dye was injected into my breast tissue to see if it traveled to my lymph nodes, which could show any potential malignancy there. In the process of this testing, three lymph nodes were removed. While it was not yet known whether I had any cancer, this was the only way to know for sure that lymph nodes weren’t involved. If i hadn’t had the sentinel node biopsy and my breast biopsy came back with cancer, we wouldn’t be able to test the nodes after the fact. This part of the mastectomy was not mandatory, but my surgeon recommended it as a conservative measure for my own protection. Malignancy was suspected in my case due to the known large size of my precancerous lesion (my diagnosis was ADH or Atypical Ductal Hyperplasia). In the end, my biopsy came back with NO cancer cells anywhere in the nodes or lesion, despite their suspicions.
All glandular tissue– which includes nipples, ducts, and lobules– was removed in addition to breast fat. It’s important to remove glandular tissue because that’s where most breast cancers originate, and I wanted my risk as low as possible. My lesion was so close to the nipple on the left side that it prevented me from saving that nipple, and I chose to minimize future risk and promote symmetry by removing both. Many who have prophylactic mastectomies choose to keep their nipples (which is called nipple-sparing). Each person must assess their own tolerance for risk and choose what feels best for them. Keeping nipples only carries a small risk percentage, and remaining intact is of a higher priority for some. I have full respect for anyone’s choice to keep or remove their nipples. It’s important to consider how you might feel looking different forever; there is valid grief when losing a part of your body. This is life-changing either way, and some choose to minimize their loss however they can, especially in the context of preventative mastectomies. I cannot speak about those with diagnosed cancer, as it adds a whole different level of safety considerations. Prophylactic cases leave more room for options.
Once the breast surgeon completes the mastectomy, she passes the baton to the plastic surgeon and the longest part of the surgery begins: the reconstruction.
This portion of surgery tends to be about 9 hours, though mine was about 11. A football-shaped area of skin and fat is removed from the lower abdomen, including the belly button. The abdomen is eventually sewn back together, in my case with some internal dissolvable stitches followed by glue to adhere the outer skin layer. About an inch away from each end of the abdominal incision was a drain tube that was coming out of my body, sewn to my skin at the entry point with a stitch (one drain on each side). The drains help the body expel extra fluid that builds up as you heal. I also had a drain on either side of each breast (4 total drains).
The slab of fat with skin still attached that was removed from my abdomen was split in half, each side (called flaps) destined to be a new breast. A circle the size of the nipple opening was drawn on each flap. That circle of skin would remain while the rest was cut away, so that flap could be fit into each breast shell and closed up neatly with glue, the skin circle serving as a perfectly sized hatch.
Blood vessels must be connected after the flap is placed, because this fat is a transplant and needs to stay alive. Like other transplants, it needs to “take,” or it will fail and die, leading to removal and the wasting of my chance at fully natural reconstruction.
My surgery didn’t go as planned.
Upon attempting to connect the blood vessels on the first side (which happened to be the left), the vessels kept failing. Four times, the surgeon connected them only to remove the clamps and have the vessels “blow.” They weren’t holding; they weren’t strong enough, perhaps. Since that was the side of my lesion, I wonder if the vessels were inherently damaged on that side, but I have no proof. He tried once more and succeeded– thank you, skill and experience– but since the blood flow took so long to get established, the skin circle on that side failed, meaning it died and couldn’t be used. Thankfully, this was the first side they did, so there was still live, intact skin on the other flap that would have been discarded anyway (I do not know how the one side stays alive, please comment if you know). They obtained a skin circle and grafted it onto the left flap, attaching with stitches.
The flap placement on the right went smoothly, as intended, and I was whole again! As I mentioned above, this process took around 11 additional hours after the mastectomy portion, and at least some of that time was spent with careful sparing of my nerves. My plastic surgeon was intentionally meticulous about nerve preservation because he knew I wanted every chance at regaining sensation in the surgical areas. I will be forever grateful to him because even at a year post-op, I am still making progress with sensation. I basically expected to have no breast sensation, but hoped to have feeling in my belly and armpits. I have gotten back more than I expected and do sense some very light feeling in my breasts as of now.
For the first 24 hours after surgery, the flaps need to be monitored every hour. This means a doctor, nurse, or PA would come in each hour and use doppler equipment to make sure they could get a pulse from the flap. This was much easier on the right side where the original belly skin was connected in the middle. They’d place the doppler sensor there and it would quickly read a pulse. Great! However, because of the skin graft on the left, there was essentially a barrier between the tissue they were testing and the doppler machine, so it was much harder to sense the pulse and it freaked everyone out each of the 24 times. For the 2nd 24 hours, I was checked every 2 hours, and for the 3rd 24 hours I was checked every 4 hours. This required an ICU stay, which was actually great for me. My ICU floor was quiet, each nurse had very few patients, and I got the attention I needed. They had talked about sending me to a regular hospital floor after the 2nd day, but I ended up staying, which was preferable.
Physical therapy came to my room and when I was able, we walked the halls and the stairs. I was gradually upgraded from NPO (nothing to eat by mouth) to a clear liquid diet, to a full liquid diet, then to a regular diet once they felt I was safe to eat solids. At some point I had my indwelling catheter removed, after which I had a vasovagal response and nearly passed out (that feeling was 0/10, do not recommend). That night, I was able to use the bathroom on my own, thankfully.
After 72 hours, they could consider releasing me. I had my surgery beginning early morning on a Tuesday, and I left for home that Friday. I had passed all of their screening tests, which showed I should be safe to continue healing at home.
On my way home with my mastectomy pillows protecting me from the seatbelt.
I have discovered through my social media updates that people appreciate hearing about my recovery, so my plan is to continue sharing about it. This surgery is becoming more common for high risk women trying to prevent cancer, and continues to be a common intervention for those already diagnosed. It can be helpful to share useful products and effective recovery strategies, as well as milestones of healing. Though each person will be on their own journey, it’s normal to want a frame of reference when things feel unpredictable. Documenting my recovery has also allowed me to preserve the memories, because they have blurred over time already.
Thanks for being here, it means a lot that so many of you care.
xo, Amy
P.S. Here’s a fun fact: DIEP is an acronym that stands for Deep Inferior Epigastric Perforator, and refers to the very blood vessels that are so important to connect to ensure this reconstruction’s success.