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On the fence about reconstruction and getting a little desperate

anniepnw
anniepnw Member Posts: 23
edited February 2023 in Breast Reconstruction

I have my DMX scheduled for Feb 07. My breast surgeon, who is wonderful insisted I consult with a plastic surgeon to make sure I made an informed decision. She referred me to two PS's. I told her initially I was leaning towards an AFC, and she is fine with that too; she could do one herself; she's recommended on a flattie website dedicated to AFCs so I am sure she'd do a great job.

I saw her first PS, and instead of convincing me to opt for a reconstruction, she inadvertently did the opposite, I felt sure I was going flat. Then I saw her second PS, and it was a very different experience, I actually felt I was on the fence again. Both PS's agreed I am not a good candidate for any flaps as I am too thin; maybe the butt one though I have a sitting job so I am not even sure how that would work. Both recommended implants. Unlike the first PS, the second one said she could place expanders right during my DMS, and (a major bonus!) I could probably get away with only 3 to 4 weeks of having expanders and then swap for smooth implants size A (I am small-ish B now). She did say we can always do it later down the road but my understanding is the expander will have to stay in much much longer. I read so much about expanders and how awful they are that it scares me pretty much out of my mind. Plus the risks of BII with implants. Another bonus though is that if I opt for expanders during my DMX, it can be done on the 7th as the 2nd PS got tentatively booked for my surgery; she's super booked, and getting on her schedule so soon is close to a miracle.

So I am still on the fence, and it's getting to the point of unbearable. I am not normally the one who has difficulty making decisions. I identify the problem, research, make a plan, and go for it. But here... I just can't decide!! I am driving myself nuts, and now my husband too as I keep asking what I should do, but he can't decide for me!

What helped you, Dear Hive Mind, make a decision? And thanks so much for making it to the end of this long post.

Comments

  • cookie54
    cookie54 Member Posts: 617

    Annie, I'm sorry your are having so much stress with this decision as I know it's not an easy one to make sometimes. To sum things up , scheduling aside, pain aside, it's what do you want for the rest of your life? I know the scheduling can be tricky but it's important that you are happy with your decision in the end.

    I can only speak from my experience with BMX, expanders in at time of surgery and 6months later implants. My decision was easy for me because over 9 year up to my diagnosis I had 8 breast biopsies. Needless to say I NEVER wanted another mammo, MRI or biospy again so I was ready! I had BMX first ,expanders in at surgery then chemo to follow. That is the reason my expanders were in so long. Were they uncomfortable, yes. I felt like I was wearing a coat of armor and had rocks in my chest. But I worked and just went about my daily life, everyone handles pain differently. Yes, I couldn't wait to get the exchange surgery, I counted down the days!

    I feel like if you sit down and list the pro's and con's of your options you will be able to decide. Poke around on here there are plenty of people who have had both surgeries. Overall just think about the long term picture of your life. Pain is temporary, you will heal regardless of what you have done. It just stinks that we all have been faced with these awful decisions. Best wishes to you, hugs.

  • mountainmia
    mountainmia Member Posts: 857

    I was a great candidate for lumpectomy, which is what I did and am very happy with. If I had a 2nd diagnosis or recurrence, I know I would opt for AFC (aesthetic flat closure). I won't do implants and I also don't have lots of material in other places to do a flap. And really, I like my breasts a lot, but I'm not very emotionally attached. I think I'd do fine with being flat, or wearing a bra with a bit of padding on some occasions.


    All that said, YOU are the one who has to be happy. Good to hear your husband is supportive no matter. Here's a thing you could try: tell your husband you're going to do this, if you say it to him, so he knows you're experimenting with the words. Say out loud, to yourself in the mirror or to him (or someone else you know can do this with you), I've decided to do AFC. Yeah. I decided to do that, and here's why ... explain it out loud, even if it just comes down to that's your gut reaction.

    And then a day or 2 later, say out loud: I've decided to do expanders and implants, and here's why ...

    Switch it up again, do it again if you need to. But I think the experiment of saying it as a decision will tell you a lot about how you really feel.


  • momgoose
    momgoose Member Posts: 71

    Anniepnw,

    I went into this decision having a pretty clear idea that I would do reconstruction, which is exactly what I did. I did not expect to loathe the tissue expanders so much (I'm only a little over 2 weeks in since my double mastectomy). It will be an exercise in patience to get through this, but my hope is that once the implants are in, I will feel more normal again. I'm only 44 and I couldn't imagine dealing with prosthetics for the next 30-50 years. Also, what I am learning very quickly is that bras are hard to keep in place when there is nothing there to hold them in place. I am basically flat at the moment and the sports bra just keeps riding up...Not sure I'd want to deal with that forever either.

    All that being said, if something goes wrong with the expanders, I'm not sure what decision I would make because they are weird and uncomfortable. A flat closure is an easier surgery/recovery from what I understand, but don't discount how attached you might actually be to the way you look. I'm not an overly emotional/sentimental person and I really just had the attitude of "let's get rid of all chance of cancer", but seeing the aftermath of mastectomies and tissue expanders has been rougher than I expected.

    I don't know that anything I'm saying will help you at all, but I found it so helpful to just read honest opinions, even if they weren't all rosy and optimistic. Reconstruction is a tougher road, but I sincerely hope that it ends with a more "normal" looking appearance for me that leaves me with more confidence in the long run.

    Christina

  • rrobin0200
    rrobin0200 Member Posts: 79

    your feelings are totally valid! It’s such a hard decision. I, too, wasn’t a candidate for a DIEP, and I also had fears about expanders. Ultimately, I went with direct implants during my bilateral mastectomy, and I haven’t looked back since. I loved the idea that it was one surgery, one recovery. For me, it was a really easy decision and an even easier recovery. Please know that you and only you have to feel comfortable with your decision. I wish I had more advice; maybe others will come along soon enough. You have to feel confident so maybe get additional opinions from plastic surgeons? Again, I wish I could tell you to “just get this,” or “just do that,” but there’s no right or wrong answer. Best of luck.. thinking of you.

  • wondering44
    wondering44 Member Posts: 247

    Hi Annie,

    Answering your question from the other thread.

    I had the TEs placed during the BMX and 3 months before my implants were placed. So, about 8 1/2 months after radiation ended. I had the TEs in about three months. The TEs weren't fun. At. All. :-D Those suckers are not anything like implants. I can't imagine keeping them in much longer than three months. Ouch!

    The implant exchange and implants were easy.

  • scaredme
    scaredme Member Posts: 65

    I had my tissue expanders in for almost 11 months (chemo and radiation afterward). It sucked, but watching my "foobs" be created was the one source of fun and humor in all of my treatment. Now that I have my permanent implants and nipple tattoos done, I am extremely happy with the result. They actually look way better than my originals.

    That said, it is such a personal choice. I would look at pictures of both and see where your heart guides you. My husband also didn't care what I did, which was such a comfort to me. Best of luck in your decision.


  • anniepnw
    anniepnw Member Posts: 23

    Thank you, ladies, some great suggestions here and definitely more food for thought. Wow, @scared, 11 months set a record for me, I don't think I heard of anyone having them that long. Glad you are done with this part of your journey.

    @Christina, hi there, appreciate your feedback. Interesting about sports bras riding up, I didn't think of it and never heard it mentioned by anyone on the very active FB group of flatties. Are your sports bras tight, compression-like, and still ride up? That would be frustrating, yes.

    I am going off rrobin's experience, thinking that actually having small implants placed during the DMX could be something I could live with. (A decision at last!) I will be calling the PS office today to ask if it's an option with the smallest implant just to create a mound. She did offer to put TSs in during the surgery but never mentioned implants which makes me feel she did not see it as a feasible option. But I'll definitely check, and if this is even theoretically possible, I'll push for it.

  • jonesd01
    jonesd01 Member Posts: 13

    Week out of BMX with direct to implant. Pros and cons - pro - one surgery, looks almost symetrical already. Cons- muscle sore, possible radiation if I need after path comes back - may damage and cause need for repair. As far as recovery - surgeon put in under skin an internal mesh "bra" that will dissolve over time but keeps from pulling on incision as much...there is still pulling and it can be super painful at times - getting better every day.

    No regrets but didnt anticipate pain level or chest pressure. Mine is behind the muscle. That being said - woud not change decision.

  • anniepnw
    anniepnw Member Posts: 23

    @jones - oh thanks! Your experience is so recent and exactly what I am looking for. Anything - expanders and/or implants would also go behind the muscles for me, as this is where my breast surgeon and the PS want them to be.

    I am curious about what you were told about possible radiation and implants that are already in? The PS said that if I don't do the expanders before the surgery and then need radiation, then reconstruction with implants will no longer be an option. But if the TSs are in and then I have radiation, it should be ok. We haven't discussed implants and then radiation. I read something that it is actually an option, as radiologists can now set up the procedure to radiate around (if I got it correctly?) the implant area, not sure if it's true.

  • anniepnw
    anniepnw Member Posts: 23

    I emailed the 2nd PS asking if she would consider using small implants, not even size A. Her response, "It is possible to place a small implant at the time of your initial surgery if the intraoperative evaluation of your remaining skin looks to be healthy. There is always a chance that your skin will not tolerate an implant at the time of mastectomy in which case this would need to be delayed or omitted altogether depending upon your preference. In the case that your final pathology indicates a need for post mastectomy radiation the radiation oncologist may ask us to remove the implant in order to achieve appropriate vectors. This can be done under local anesthesia if desired. "

    I followed up and asked if there were any differences in healing times or other possible consequences of putting in an implant first vs. an expander during the surgery. I was thinking about it in terms of the fullness of a small implant versus the expander and the possible stress on the surgical site. She said, "The expander puts less pressure on the skin envelope as it can be put in essentially flat or inflated depending on tissue characteristics at the time of surgery. Therefore, the tissue expander is the more conservative approach."

    I guess I can go into my DMX with an open mind and be ready to wake up either flat or with devices in my chest (implants or expanders), and there's no way to know until the moment of the surgery, flat or full, and if full, which device the doctors will choose. My risk tolerance is pretty low but oh boy, the expanders just turn me off so much. Sorry about all my whining!

  • pjc5399
    pjc5399 Member Posts: 32

    I just had my surgery yesterday. (I did a little day 2 update on the surgery thread). I did originally want direct to implant but after all the pros/cons my PS convinced me that expanders were a better way to go and had better results long term. So I’m sucking it up for a few months. I won’t get the pathology results until next week so hopefully no more treatment. 🤞🙏 We shall see! He did fill them a bit during the surgery and they are lumpy, bumpy, hard, bruised and look nothing like “real breasts” but there are mounds there. I actually would be ok with the size they are now, I was an A, small B and I’m quite petite. No desire for large breasts. Such a difficult, personal decision.

  • wondering44
    wondering44 Member Posts: 247

    Hi pj,

    I had brand new breast implants right before my diagnosis. I had a mastectomy (single) with the implants left in. The plan was to do fat grafting after treatments on it to fluff it back up. Unfortunately, the radiation on top of the existing implant did not leave it to my liking. I looked like I had a "botched" boob job. I ended up with capsular contracture a few weeks after radiation ended. The "botched" look was not immediate. I wore big shirts to try to cover it up. I have not worn a swimsuit since. I had a BMX with TEs and had the new implants placed about three months later. While the TEs sucked, the results are pretty awesome! I look forward to putting on a swimsuit again soon. I can wear small shirts again and I love the look in the small shirts.

    I wanted to get everything done quickly. What I learned was that sometimes "waiting for results" can be beneficial to the end result. I am glad that I had the reconstruction with TEs. I did hate the time with the TEs. It was not without discomfort and they looked odd.

    I wish you great results from your reconstruction and hope you have minimal discomfort during the TE process.

  • makingmyownchoices
    makingmyownchoices Member Posts: 11

    Annie, I actually got a butt flap (SGAP) reconstruction. I do a sitting job too, and sitting isn't a problem. I am a little tender on that side when I lay down on my back on an exercise mat, but my surgery was 3 months ago so it could just be still healing.

    There are 2 kinds of butt flaps, one that comes from the back of your hip (the SGAP), and the other is the butt cheek, which seems like it could be uncomfortable when sitting. Very few PS's do alternative flaps though, including ones that do a lot of DIEP flaps, as the other types of flaps are more challenging. I had to go to a big academic cancer center to find one.

    I had an expander, and it really wasn't that bad. The PS wanted to make absolutely sure I wouldn't need rads & if I did wait until after that. One of the fills was a little tight for a couple days, but that was it for me aside from the pain & tenderness from the mastectomy that slowly died down. The expander was shaped a bit oddly, but that is temporary. Some people have trouble with expanders and some don't.


    One thing I do with big decisions that helps me is to envision my life with the different choices, and eventually one just feels right and the other feels off somehow.

  • anniepnw
    anniepnw Member Posts: 23

    Thank you @makingmyownchoices! Great perspective and great information. Which cancer center did you go to, if you don't mind sharing?

  • SoItGoes_KV
    SoItGoes_KV Member Posts: 2

    Just throwing in my comments. Happy to discuss or answer questions. I am VERY HAPPY I got a diep reconstruction in 2020. I am thin but had enough on my stomach to recreate my A cup. The girls look great. Mammogram technician did not notice one was a foob. Also my recovery was done in 6 weeks. Pain was minimal. No followups required. I have heard too many horror stories about implants and did not want to constantly have to have "updates". Good luck everyone deciding. Regardless of choice find a good plastic surgeon. Dr. Ho or Dr Santorum(sp?) at Kaiser in Santa Clara, CA were amazing

  • Annie, sorry for the late reply and I hope you are recovering well, I am not on here very often.

    I didn't go anywhere famous, just the NCI-affiliated academic cancer center I am fortunate to have in my city on the east coast. I think I remember seeing from another post that you are on the west coast, so you'd probably be better off going to NOLA (or one of the well-known cancer centers on the west coast) for a later specialty flap surgery - back when I thought autologus wasn't going to be a possibility locally I was contemplating making the trek to New Orleans after a year or two if I really couldn't take being flat.

  • anniepnw
    anniepnw Member Posts: 23

    @makingmyownchoices - yep, I heard that New Orleans is a destination for butt flaps. Right now, I am swollen (post-op edema) and flat - maybe not even very flat, that's how swollen I am lol. But I found a surgeon at the local premier cancer canter who seems to be the only one offering butt flaps, and apparently, he does a really good job. I'm going to put the reconstruction, even thinking about it, on hold until I heal; now, the idea of another surgery sounds horrendous. Another consideration, I wonder if insurance is going to stop covering butt flaps the way they are apparently ready to stop paying for DIEPs. I should stop here, I don't have anything polite to say...

  • julscol
    julscol Member Posts: 4

    Hi all,

    I have not visited this site since 2005/2006 when I went through my treatments. I just couldn't stand to immerse myself in it longer than I had to. I had one side SGAP after one side mastectomy and many implants. (had to redo from radiation)

    If anyone is wondering whether to go this route, I would be happy to discuss what I went through. I am not saying I regret it, but there are definitely side effects - because of the huge scar on one butt cheek, I am pretty sure some of my back pain is due to all the scar tissue pulling my back out of alignment. It was horrific 11 hour surgery too, on my left side, as one team worked on my butt and the other on my breast. My left leg swelled up from no circulation. etc etc.

    I still believe out of all the choices, it was my best. I don't think about it 24/7 any more, and I have continued to have a beautiful life. Worth every moment of pain and horror. Good luck to all you out there.