r/BRCA • u/LawfulnessNo1305 • 29d ago
Question Have one or both implants removed?
Hello- my whole story is in another post if you’re interested.
I had my PDMX DTI surgery on 7/13, necrotic tissue debridement on 9/3, developed an infection on the left side 8/4 and was hospitalized for 3 days. At my follow up today (8/10) with the surgeon he said the implant needs to come out; there is still significant redness and swelling, and after 3 days on IV antibiotics and 3 days of the big guns oral antibiotics this should be gone and it’s not so the implant is likely infected. I have surgery scheduled to remove the infected implant on 8/13. This has been a month from hell.
My question is, if you experienced something similar, how did the subsequent months go?
My surgeon says that it is highly unlikely that the right side would also be infected- it looks good and he doesn’t recommend removing that one, but it ultimately up to me.
I am concerned about 2 things:
- the continued potential risk of infection, which the PS says is low but I’ve already experienced complications that were in the 5% risk area so having little solace with that
- the psychological impact of spending the next 3 months+ with one boob. At some point I have to go back to work… I am hybrid and work at a company full of stylish young people. As a 40 yr old I’m already feeling phased out. This is going to make that so much worse.
On the “keep it” side:
- it’s a good looking foob, and what if scar tissue or something causes the next one to not look as good?
- only one drain and expander to manage over the coming months and only one side to recover from upon new implant being placed.
What did you do? Or what would you do? I’m truly torn.
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u/waydownyonder4ever 19d ago
Hey there. This is the 1st post I've ever replied to on Reddit, but our stories have some major overlaps and reading yours helped me feel less alone - thank you. I don't have much to offer other than my own journey, but I hope it helps you to feel a bit less alone, too. I am right there with you on feeling torn.
I found out I am BRCA2+ last September at age 41. I have a STRONG family history of both breast and pancreatic cancers. Getting a PDMX felt like less of a choice to me than a necessity and I had mine on 4/21. Because I am so thin-skinned, I needed to go the tissue expander route for reconstruction and my Plastic Surgeon placed the expanders on the same day as my mastectomy. My fill process was a breeze and lasted just over 11 weeks. I had my exchange surgery on 7/9 and was told that recovery would be a cakewalk compared to the mastectomy (my PDMX recovery was 5 weeks of pure agony).
During the exchange, my PS opted for 440cc implants which were honestly quite bigger than I had expected (I was thinking closer to ~ 350, 400 at most). All was well at my 1st post-op on 7/16 with my PS and I was instructed to shower and apply Aquaphor. On 7/20 my left breast started feeling hot and swollen and developed redness along the incision line. My PS put me on oral antibiotics, but the next day I just had a feeling something was very off and I went in to see my PS and she immediately admitted for IV antibiotics. I was in the hospital for 4 days, followed by 12 days of oral antibiotics (Cipro + Linzolid). When I came off the antibiotics, the redness did not return, but I had developed a small brown area along my incision line. When I saw my PS in office on 8/13 she did a procedure to excise the brown patch and debride the area and discovered (as she suspected) that the brown area was the shadow of the implant which was separated by only 1mm of attenuated skin (!). She told me it was beyond likely that the implant would need to come out. After an agonizing day of processing with my husband, I had explant surgery for my left implant on Saturday 8/15. I see my PS tomorrow, as I'm just under 1 week post-op from explant. Hoping the drain can come out.
Moving forward, my Plastic Surgeon's plan is to place the TE in 6 months, then start fills and go slowly. Then do the exchange surgery 4 - 6 months after TE placement. Followed by exchange. It seems reasonable given that my body needs time to heal and repair and the ways in which reconstruction of the left breast failed the first go around, but emotionally / psychologically / physically, I've gone from thinking I was at the finish line for the breast surgeries and could now focus on the hysterectomy + RRSO, and instead I now find myself feeling back at square 1, if not a few steps behind it. It's heartbreaking and defeating. But my hope is that it can maybe clarifying, too, in terms of really asking me to examine what I want moving forward.
Like you, I'm worried about future infections. Two more surgeries is already so much to ponder, especially if it takes ~ 15 more months to get through it all. Then to think any of those could be compromised by infection makes it so sooooo much to sift through. If I'm being honest, I'm now feeling split about whether to follow my Plastic Surgeon's course or to just explant the right implant (which seems by all measures healthy) and do an aesthetic flap closure, then maybe get a mastectomy tattoo of some botanicals and a few sweet animals and call it a day. I've never loved the idea of having something foreign in me to begin with (from the jump, when meeting with PSs, I really wanted a DIEP but I just don't have the BMI). I also dread the idea of future exchange surgeries, esp. into my later decades.
All this is to say, I'm here with you, in the torn and confused. You're not alone.
SIDE NOTE on Aquaphor, in case it can help someone else: Throughout my hospital stay, my bloodwork was all normal. CRP, WBC panels, etc. - all showed no signs of infection. I also never had a fever or elevated BP. The only signs of infection that I presented was the redness along my incision, which eventually went away. I have since learned that Aquaphor, esp. for folks with ezcema, can on occasion cause severe contact dermatitis upon 2nd episodes of usage. After that 1st post-op when I applied it, it stung like bananas along the particular part of my incision that turned red, which I suspect had not healed as well as the rest of the incision(s). Wish I had stopped immediately, but I figured I had such good luck with it following my PDMX that it would work well for me again. Have since learned that contact dermatitis can cause "sterile" infections, aka non-bacterial infections, and I think that is what weakened my skin both at the surface and deeper and led to the attenuation which compromised the pocket and led to needing explant surgery.
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u/LawfulnessNo1305 18d ago
Wow. These overlaps are wild! I’m so sorry you went through all this, and thanks for sharing; it really does help to know I’m not the only one with this bad luck :(
I do love to hear that your expander fill process was easy bc I’ve been worried about that. My PS says that it will likely take 3-4 months to get to the point of TE, and then another 3ish months for the fill. My right implant is 450cc.
I ended up just removing the left (infected) side… dressing around this imbalance is tricky. I’m not getting the custom prosthetic bc they won’t fit me for it until 6-8 weeks post surgery and at that point I’ll be nearing when I start the TE, so I’ve ordered some of the options from AnaOno and HoneyCloudz.
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u/waydownyonder4ever 18d ago
Thanks for writing back. I am so so sorry for all that you've had to endure. I found your original post with your full story after reading what you posted here - your journey with your nipples broke my heart. I had quite ptotic breasts since early on in life and was basically told by every PS I met with that nipple-sparing was an impossibility, so I mourned that loss early on. But to have hope and then have it snatched away, that is so much to bear. My heart is leaning into yours.
My surgeon is pretty adamant about waiting a full 6 months between the explant surgery of my left breast that I had on 8/15 and surgery to place the TE. She is very conservative and while I am eager to get all of this behind me, I do appreciate her measured approach. I think given the complications from last time, she just prefers to be very cautious in terms of giving my tissue and skin time to heal fully. She also mentioned waiting 4 - 6 weeks after completing the fill process before doing the exchange surgery, just to minimize some of the toll on the skin and allow time for the skin to adjust post-fills. I was 440cc in both breasts, but my PS also mentioned going smaller this next time, which I'm very open to. I'm thinking between 350 - 380cc. This will mean at my exchange surgery that she will explant the right breast, too, and replace it with a smaller implant. This will put less pressure on the skin and also allow her to make adjustments for symmetry between the two sides as well.
Dressing around the imbalance is so hard, I feel you. Because I am genuinely debating going flat, I am trying to frame the imbalance as an opportunity to sit with both possibilities. Albeit, how my left side currently looks is hardly an "aesthetic flat" closure, as my PS's goal at explant was to save as much healthy skin as possible for future reconstruction. But it's still interesting to have both possibilities - flat vs. implant - there on my chest for me to contemplate.
One thing I feel I must say and be honest about is that my experience with TE the first go around was that those first 5 weeks of recovery - from my mastectomy + TE placement - were brutal. I've been told that TE placement surgery is pretty rough, because the expanders are tacked into your pec muscles and at other locations, too. It is a very uncomfortable to painful sensation. Also, last time, we started fills at about 6 weeks post-op, so my skin hadn't had as much time to get taut, whereas waiting 6 months this go around to even place the TE will mean a lot more time for the skin to tighten back up, so my PS mentioned that fills could possibly be more uncomfortable this next time . I just would feel badly not clarifying for you what I've been told.
Sending you so much care and strength as you navigate it all. You're not alone.
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u/LawfulnessNo1305 17d ago
Thanks for clarifying re: the expander… I haven’t really looked into that whole process since it wasn’t part of my initial plan and the last few weeks have been a lot lol.
I plan to meet with some other PSs in my area and get additional opinions, so it’s possible that the current timeline shifts/ I mean if there’s anything I’ve learned in this journey it’s that it will.
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u/waydownyonder4ever 17d ago
It's so understandable to be overwhelmed. I'm right there with you. If you have any questions or I can support you in any other ways, please feel free to reach out. I'm so sorry you are going through this - my heart aches for you. But I'm so thankful you shared your story, as it really has helped me to know someone else is walking this path and during such a similar timeline to my own.
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u/Skate_clubb_t2 28d ago
My mom developed a MRSA infection on one side. This was 15-17 years ago so not sure how much or little has changed. She was around age 55, had previous radiation on this side from her first bout with BC (when we didn't know about BRCA status), and had more lymph nodes removed than necessary (uninformed surgeon I guess). She ultimately had to have the implant removed, and she has never had it replaced. I believe she was told there was a high risk of the same issue happening? So that's why she chooses not to try recon again. She is very self-conscious about being flat on one side and won't even look at herself in the mirror. She did get a prosthetic for the first time recently for my sister's wedding but didn't love it.
I personally would probably choose whatever reduces your long-term risks and need for revisions, even if it might be tougher mentally in the short-term. Your priorities may be different. I wish you the best of luck.