Reconstruction Surgeon Has Reconsidered Our Plan Post-Masectomy

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pclaradactyl
pclaradactyl Member Posts: 5
edited November 2019 in Breast Reconstruction

I am freaking out.

I am 27. Diagnosed with stage 2, triple negative, IDC. Learned I have a genetic factor Li Fraumeni Syndrome (LFS) which basically means my lifetime risk of all cancers is higher (I inherited a broken tumor prevention gene, it's super rare, there's like no clear protocol for anything and all the doctors are basically flying blind when identifying it's implications which I think is why I'm in this situation now). Cancer never spread to my lymph nodes, so no plans for radiation.

I haven't had kids yet, but want them someday. I'm currently single.

We did my mastectomy on Friday (last week). Given my family history and genetic risk of additional cancer in my life it seemed like the choice. In making my plan, we originally planned to do analogous tissue for reconstruction with my thigh and ab. My surgeon was so enthusiastic and it gave me a lot of confidence in my post-surgery outcome. She even suggested I might have nerve reconnection and light touch sensation after. My mind was blown.

At my first post-op appointment she's kinda had a change of heart. It started with us questioning if I needed the CT scan for her to see blood vessels when she mentioned it after visiting me post-surgery (I'm supposed to avoid them if possible, but I can do one if necessary). She said she'd look into it. She did, but now she is strongly recommending I do implants instead. So many reasons, which I guess became apparent after she considered how my genetic factor played in—maybe it forced her to look at big picture? I dunno. I'm honestly mega confused. I thought we had discussed most of it in September and she was selling my on analogous tissue at the time. But now it's completely flipped. It's a long recovery, I can get back to my life sooner with implant, results are better for the donor site if you've had kids already, if I need a future surgery in my abdomen it'll be harder (a concern for an abdominal cancers I'm at higher risk for, I think this is her biggest concern), why do so many surgeries on someone in their 20s, no need to CT scan, etc. It was really surreal because she also kept emphasizing that she never recommends this—she normally is persuading people to do analogous—but after my question about LFS she spent all week reconsidering it and she really thinks my best overall quality of life choice is the implant and is strongly urging me to switch.

I'm just so heartbroken. I had a plan. And now a week post-mastectomy it's possibly changed. I was sold on the plan an enthusiastic to get through it... and now I have tissue expanders in, drains tied around my waist and I'm supposed to reconsider it? I made this decision in September. I went into my mastectomy with no real concerns or worries because I felt so confident moving forward, but now AFTER the mastectomy I have to reconsider all this.

My surgeon is amazing. I still love her and appreciate her being honest with me. She's incredibly apologetic too. So I'm not mad at her really. I'm just so frustrated and confused.

I'm posting to ask about people's experience?

  • Has anyone used analogous tissue before having kids and having them later? Was the tightness post-reconstruction really that problematic? She said the youngest she's done this surgery is 31 on someone with no plans for more kids. That seemed like a big factor.
  • How do the implants compare to tissue expanders? They say the gel implants are softer. Like a lot softer? Do they really feel real-ish? Or do I need to manage my expectations?
  • Is the analogous tissue surgery really that bad recovery-wise? I'm in between grad school and applying for a job now so I have this window of no responsibilities that seemed ideal for an invasive procedure to suck up months of my life (living with mom, so not worried about finances).
  • What are people's experience with dating post-implants? I don't know why but I felt more confident with the idea of it being my tissue.., but now that might be a different story.
  • I was really sold on analogous tissue. Can someone try to sell me on implants? Some of my frustration is that it feels like a downgrade, but maybe I just need help reframing it.

No decisions been made. We haven't scheduled reconstruction yet. I'm gonna push on her for a better understanding at what changed from when we made the plan to now. I think that'll help me if I understand better what triggered her to change her mind. But having some input from people who've done it will really help I think.

Comments

  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited November 2019

    pclara - sorry you find yourself here. Please go to the main menu. There are tons of threads that address every one of your questions.

    Edited to add - it's better if you keep all your questions on one thread so people who choose to follow don't have to search around.

  • bcincolorado
    bcincolorado Member Posts: 5,758
    edited November 2019

    Agree.

    If you have not had children before I can tell you that when you are pregnant your body does change automatically and breast tissue changes as well automatically. That may play a part of her reconsideration. Since you trust your surgeon it could be she has done more research as well and changed opinion as well. I know most good doctors continue to educate themselves and will advocate for their patients as well.

    Best wishes for you.

  • VegGal
    VegGal Member Posts: 507
    edited November 2019

    Get one or two more opinions. Autologous tissue transfer, while a lot up front, actually would result in less down time over a lifetime.

    Good luck with your decisions.

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