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Scared I will hate how I look no matter what

sleepylibrarian
sleepylibrarian Member Posts: 9
edited September 2022 in Breast Reconstruction

Content warning: HUGE body hate issues.

I'm 42, about to have a unilateral mtx, and really struggling with how to decide whether to have reconstruction or not. I know I don't want implants. It's DIEP or flat closure.

My problem is that I love my breasts. Like REALLY love them. When they started growing when I was 13, I used to do visualization every night to help them grow, imagining them being happy and round in gentle warm sun on a peaceful beach, for example. Hilarious, I know, but my point is that they are just a major part of my self image and always have been. I mean, they aren't as glorious as they were a decade ago, but my breasts are the only part of my body I've ever actively liked and found attractive. I struggle pretty hard with body image issues already, and my bust is the only thing that I feel good about highlighting when I dress up.

Right now I'm scheduled to have skin sparing mastectomy with a temporary TE and then DIEP after we know whether I need radiation, etc. I'm can't keep my nipple, and I've cried a lot over that. I'm just going to feel mutilated and fake at the end of it. I decided on DEIP because I figured if I have reconstruction, at least I can still have cleavage, and that's probably better than nothing. But my worry is that I'm not sure - - maybe nothing would be better.

I mean, if I don't like how I look at the end, then I've really made a bad decision to do all that dangerous harmful surgery, right? And I know I won't like how I look. I'm worried I'm going to go through all the pain and risk and effort of reconstruction, maybe even ending up with abdominal dysfunction and numbness, and still just cry and feel revulsion every time I look at myself. I'm so scared I won't ever adjust. I honestly cannot imagine letting anyone ever touch my reconstructed numb chest. I feel a cold pit of dread in my stomach whenever I think of it.

That makes me feel like I should just go flat. I know I would not be happy with how I looked, but at I wouldn't have to put myself through all the extra surgery and risk and trying,just to be disappointed and maybe worse off physically.

I just don't know what do. I can't figure out how to predict what will make me feel better when my options both sound completely miserable.

Comments

  • kaynotrealname
    kaynotrealname Member Posts: 366
    edited September 2022

    I will say that things sometimes change after surgery. You're getting your cancer out. That may make you feel happier than you can imagine right now. I think I would just get the skin sparing mastectomy and sit on how you look and feel for awhile. You may find that you do want to go flat and going there after a skin sparing mastectomy isn't a traumatic surgery. But if you change your mind, then you'll have some skin that will make reconstruction easier at a later date. There's no need to make a decision before surgery. You can always change your mind and put it off as long as you want to. And I'm so sorry. I wish none of us had to contemplate such horrible choices.

  • abigailj
    abigailj Member Posts: 101
    edited September 2022

    SleepyLibrarian, I felt very much as you did - even though 62 at time of my BMX, I still really liked my body, really enjoyed my breasts and how they looked, always had a positive body image (thanks Mom!) and was devastated when my treatment choices were either a very disfiguring lumpectomy on the ILC side, smaller lumpectomy on the IDC side (yeah, diff cancer on both sides at same time...what are the odds, right?), or a BMX. They also mentioned flat since they are obligated to bring that up and while I respect that is a choice some other women make and it is right for then, I did not see that as a possibility for myself, as something I could ever be happy with. So, I consulted with both breast surgeons and plastic surgeons, learned that I would get better aesthetic results if I did a BMX with immediate DIEP recon, (no expanders, no waiting, one single long surgery, and you wake up with breasts - they'll be bruised, a little misshapen, and not looking anywhere near as good as they will after you are healed in a few months but present and for me, same size as I was before which was important to me), so I opted for that. I was fortunate that both skin and nipple sparing was possible, although I hear that the 3D nipple tattoos (which I researched in case they found cancer cells too close and had to remove) look quite good when done by someone very skilled in that. And I wound up not needing radiation but that was not known until after the surgery when all the facts about what was really going on inside were known. I had some wound healing issues, and subsequently had small dog-ear on one side of belly scar removed, had some fat grafting (twice), most recently 6 months ago and they are now really symmetrical like before and my breasts look almost as good as they did when I was 20 years younger and I am quite pleased with the outcome. The breasts are a little fuller on the side than my original ones ('side boob' is the term I saw used for this), but not dramatically so. My breasts are warm to the touch, like the real ones, and feel like the real ones when touched. I have around 60% - 70% of the sensation I had with the real ones (nerve grafting done during the DIEP and sensation improved over time. I also like having a flat belly. On the downside, the healing is LONG - hopefully a lot less time for you being much younger. I suggest reading the thread "Seeking DIEP Recovery Stories" if you haven't already for a lot more information on both the experience and expectations during healing - you won't know what it really looks like for at least a few months, more like 6 months in my case but again, I'm a lot older than you. Lastly, the PS I used had been doing almost exclusively DIEP, which as you know is a highly specialized microsurgery area of practice - I hope your surgeon is equally skilled should you opt for DIEP. Whatever you choose, my best wishes to you for the best possible outcome, physically and mentally - Abigail

  • serendipity09
    serendipity09 Member Posts: 769
    edited September 2022

    The most important thing is to get that beast out of you. I chose a skin sparring (couldn't do a nipple sparring) BMX almost two years ago with immediate reconstruction with TE's that we're exchanged to implants July of 2021. I considered doing a DIEP initially, but like you, there were certain parts of my body that I really liked. The implants looked really good, they didn't look like my own breasts, but still looked nice. Unfortunately I had a recurrence and had to do radiation with the implants. The implant on the radiated side caused me so many different problems afterwards, that I'm a little over a week out from having had a DIEP. My breasts are very pretty right now, minus the flap, my abdomen, not so much due to the swelling, incision, Oh and a whole new belly button. My old one was pretty. My point is that I was concerned about my looks too. I saw my PS, whom I trust completely, a few weeks before my surgery and discussed every aspect of this surgery. That's the important thing, the expertise of the PS. I actually had two. The micro surgeon and my regular PS. I went in to this surgery knowing that they both knew my concerns and were on the same page with me regarding my end results.

    This is not an easy decision and it's a very personal one. I wish you the best in your decision.

    If you'd like to talk more, you're more than welcome to PM me

  • jh40
    jh40 Member Posts: 140
    edited September 2022

    I went flat and I have no regrets. It’s a very personal choice, but for me it was about avoiding radiation and making sure that if I had local recurrence it wouldn’t be harder to detect under an implant. I know they can detect recurrence with implants, but for me I didn’t want to chance it. Or have to go through all of that again.

    The other thing for me was that I knew I would have numbness no matter what, and I couldn’t rationalize a foreign object in my body beneath numb skin. It didn’t seem like there was much point in that, especially with the extra surgeries involved.

    I can say my surgery and recovery were both smooth, and I had no pain afterwards. Definitely an easier process than I expected

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,730
    edited September 2022

    jh40,

    Whether to reconstruct and which method to choose is always a personal decision. I’d like to make a small correction. Most folks with implants have some or even a lot of skin sensation. The skin is still there and many nerves regenerate. What we don’t have is any underlying deeper sensation since there is no breast tissue remaining. I have almost total skin sensation (skin sparing bmx) but nothing deeper

  • jh40
    jh40 Member Posts: 140
    edited September 2022

    exbrnxgrl - It is a personal decision, and I’m always quick to include that if I post about my own perspective/experience. I’m glad to know that there is some sensation for you and others with reconstruction.

    Of the 6 women I’ve known who’ve gone through reconstruction none have retained much feeling and all have had to have multiple surgeries, some had a harder time than others but none have (or had) any regrets.

    I myself have numbness across my surgery side chestbut do have feeling along my collar bone and below my scar. I knew going in that I would experience some level of numbness but the degree of numbness I would have I didn’t know until it happened.

  • serendipity09
    serendipity09 Member Posts: 769
    edited September 2022

    jh40 - I didn't have feeling whatsoever from my left breast across to my right underarm. I was told I could regain some sensation, but it didn't happen.

    During my recent DIEP, my microsurgeon told me he'd be performing a procedure called Resensation to hopefully give me some feeling back. From the moment I woke up from the surgery I had some feeling and even more now. Never realized how much I missed those feelings/sensations.