Unilateral or Bilateral Mastectomy - Pros & Cons for ILC

Hi @karstock

I'malso going through ILC. Stage 2, 4cm on the left side, mass that extends pretty far. Longest chain close to 6cm. I'm trying hormone therapy in the hope I can have BCS. Then I have radiation. What was your decision? I'm very overwhelmed with the whole reconstruction process. I know i want it, just not sure which one. Love to hear how you're doing.

@tacocat I think BCS stands for breast-conserving surgery.

That wasn't an option for me because my tumors were multicentric, so I had to make peace with a mastectomy right from the beginning.

I won't lie—even with the skin- and nipple-sparing aspects of my surgery, I still struggle emotionally some days. I'm slowly processing everything and finding acceptance, but it definitely hasn't happened overnight.

If it would be helpful, I'm happy to share more about my personal experience. Having one natural breast and one reconstructed breast with an implant is something I never imagined I would have to navigate, and it's been an adjustment in ways I didn't fully anticipate.

Hi @tacocat

I absolutely understand your position, and in hindsight, I'm actually grateful that I didn't have a choice. Decision fatigue is very real with all of this.

Here's what I can tell you about myself and my outcome four weeks after surgery. I know we all have different priorities, constraints, and perspectives, and ultimately each of us has our own unique experience. Still, if sharing my experience helps in any way, I'm happy to do so. And if you have any questions, please don't hesitate to ask.

I'm 55 and very active. I hike, kayak, camp, backpack, and rock climb. For about eight months of the year, I do most of those activities in a tank top or sports bra and quick-dry shorts. My breasts had aged better than most other parts of my body, and I've always been appreciative of that! I've been divorced since 2010 but have been in a solid long-distance relationship since before COVID. Physical intimacy is an important part of that relationship when we're together.

When I was told a mastectomy was my only option, I was devastated. I couldn't imagine what that was going to look like or how I was going to feel about losing something that had always been part of my identity. Would my clothes still fit? Would I have to change the way I dressed—moving from lightweight, unstructured bras to padded bras that hid the changes, or from V-necks to higher necklines? How was I going to redefine the way I saw myself? What was my boyfriend going to think? Would it change our intimacy? Would it affect his attraction to me? Would it ultimately affect our relationship? And how was I going to get through multiple surgeries and long recovery periods when so many of my normal coping mechanisms—being outdoors and staying active—would be off limits for weeks or months at a time?

There were so many questions. So many worries. Those concerns never completely went away, but it didn't take long for me to decide that I needed to decide what my best possible outcome would look like and then determine what might be achievable. I literally made myself a "best-case scenario" list and started working with my medical team to see how much of it might be possible. At the very top of my list was removing the cancer from my body before it had a chance to spread. My mammogram with contrast and ultrasound both suggested my lymph nodes were clear, so I was hopeful we had caught it in time. Second was preserving my skin and nipple if it was medically safe to do so. Both of those turned out to be game-time decisions, and I wouldn't know the outcome until I woke up from surgery. Third was pursuing DIEP flap reconstruction for a long list of reasons. Fourth was accomplishing everything in a single surgery if possible, so I would only have one major recovery period instead of several. On my "wish list," I also included nerve neurotization. I'd read that it was becoming more common, and the possibility of regaining some sensation in my breast and nipple felt almost too good to hope for.

As things turned out, I found a plastic surgeon with extensive experience performing neurotization, which felt like an unexpected win right from the beginning. Unfortunately, during my initial consultation he explained that I wasn't a candidate for DIEP because I simply didn't have enough abdominal tissue to create a matching B cup. I was crushed. I actually sat in his office crying while he gently explained that I was an excellent candidate for immediate implant reconstruction and that he genuinely believed I would be very happy with the results. He also made sure I understood that insurance would cover any medically necessary revision surgery and even procedures on my left breast, if needed, to achieve better symmetry. He explained that if I later decided I wanted DIEP, I could gain weight first, or if I was happy with the implant overall but wanted to improve the contour, he could use fat grafting to soften and round out the upper portion of the reconstructed breast. I was still heartbroken, but once again the decision had essentially been made for me. There wasn't much left to do except accept it and move forward.

Now, four weeks later, I can honestly say my implant looks much better than I expected. Standing or sitting, the difference between my breasts is surprisingly subtle. With a bra on, it's even less noticeable. Lying flat on my back is where the differences are most obvious because the implant doesn't behave like natural breast tissue and I don't yet have the soft tissue around it that I once did. The implant is visibly more prominent when I'm lying flat on my back, and I honestly don't like the appearance at all. For now, though, I'm reminding myself that I'm only four weeks into recovery, and I'm giving everything time to settle before deciding whether it bothers me long term. As for how it feels...right now it honestly feels like I have a very tightly filled water balloon in my chest. My skin is still somewhat numb, which is a strange sensation in itself. My surgeon has reassured me that both the implant and the surrounding tissues will soften over time and continue to settle into a more natural look and feel. I am also expected to regain more sensation over time but nerves grow very slowly so that final outcome will take some time to achieve. At my three-week follow-up, my plastic surgeon showed me new photos alongside my preoperative pictures. Honestly, I thought my reconstructed breast looked great. He also pointed out something I had just started noticing myself: a slight lack of fullness along the upper part of the reconstructed breast compared to my natural side. He explained that if it continued to bother me after I was fully healed, it could be corrected fairly easily with a small amount of fat grafting. Perhaps the biggest surprise of all has been my boyfriend (mostly because I had been judging my new body so harshly and I guess I expected the same from him). He has been wonderful through this entire process. He was genuinely surprised by how similar my breasts look and wasn't bothered in the slightest by the differences he could see. And there was zero hesitation towards intimacy once I was feeling up to it.

Some days, I still struggle with how my reconstructed breast feels. The numb skin and the "water balloon" sensation are constant reminders that everything is still new. But emotionally, I'm in a much better place than I was before surgery. Every week, things look a little more natural, feel a little more normal, and become a little easier to accept. Looking back, I've realized I spent too much time worrying about the unknown. That doesn't mean the emotional adjustment isn't real—it absolutely is—but for me, the reality has been much kinder than my imagination came up with. One thing this experience has reinforced is that grief isn't a straight line. The stages of grief don't happen in order, and they don't happen just once. Lately, I do spend much of my time in acceptance, but I'm still regularly caught off guard by moments of shock, anger, and anxiety. Sometimes it's something as simple as pulling on a dress I haven't worn since before surgery or seeing a friend who knows what I've been through but hasn't seen me since the procedure. Those moments can unexpectedly remind me that my life has changed. Overall, though, I feel good about where I am. I'm only three months past my diagnosis and one month past surgery. I'm currently cancer-free, which is an incredible gift. At the same time, I'm still emotionally vulnerable and working hard to regain a sense of normalcy in my life. I don't expect that to happen overnight but I'm grateful that, with each passing week, life feels a little easier than it did the week before.

I hope at least some of this helps with your decision making. And good luck with your appointment on Friday.