Doubting myself about reconstruction, is this normal?

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bluefin
bluefin Member Posts: 50
edited July 2015 in Breast Reconstruction

I had a BMX with TE placement on 6/17. I have been planning on DIEP reconstruction, but was not eligible to do so at the time of the BMX as we were nearly sure I was going to need radiation. However, radiation may not be part of the picture after all (due to clear post surgical path report, yahoo!) so I may be able to do the DIEP sooner than I thought. I still have a couple drains from the original BMX and haven't had any fills yet. I don't know if my PS will continue with fills or if we would just schedule the DIEP for when I am fully recovered from the BMX, it is a conversation I will be having with him next week.

Here's my issue. I'm 32 years old and happily married with a nearly 3 year old son. While I feel like I have mentally benefited from seeing TE's under my skin versus being completely flat, I'm really starting to question myself about reconstruction and all of the surgeries that go along with it. I had thought about reconstruction for 6 months while I underwent chemo and felt like I was making the right decision, and now part of me is wondering if I should just remove the TE's, forget about the DIEP, and just go flat.

I know nobody can tell me what I should do, but are these feelings normal? If anyone else has had similar feelings, please share!

Comments

  • YoungTurkNYC
    YoungTurkNYC Member Posts: 334
    edited July 2015

    These feelings are completely normal, and I still have these feelings sometimes 2.5 years after my mastectomy with implant reconstruction. 

  • glennie19
    glennie19 Member Posts: 6,398
    edited July 2015


    It is a decision that only you can make. Draw up a list of the pros and cons.  Talk to women on here who have had recon surgery and those who remained flat. And there are a few who had recon, and then had it reversed,, TE's removed, etc. Don't feel pressured one way or the other.  I decided to remain flat,, always knew that I would not want recon, but yet, I had a LOT of pressure from the doctors to do recon.  It is YOUR decision.

  • debiann
    debiann Member Posts: 1,200
    edited July 2015

    Yes the feelings are totally normal. Aftergoing through chemo younjust want your life back on track, especially if you have young children. I did DIEP, while the recovery was not awful, it was no picnic either, and there is more than one surgery. Plus there is a risk of complications. 

    Since the te's are already there, why don't you do a few fills and see how you like them. I think you can keep te's for a long time, no need to rush into making a final decision at this time. Mayve down the

  • sandcastle
    sandcastle Member Posts: 587
    edited July 2015

    I...Had Recon....the great thing was when I woke up that was the first thing I did was to feel my left side...and there was a bump....that made me very happy....but then I ran into infection and two months later I had to have a revision.....the Doctor said I have up to Five years to try again.....but I did not...it all was too much for me to go through...and really I just felt beautiful anyway....Liz

  • ual0307
    ual0307 Member Posts: 62
    edited July 2015

    I went thru much the same thing. Fought hard for immediate recon but not possible. By the time treatment was done, I was so tired of doctors I just didn't do it. Even looked at customized prosthetic. But I also kept researching.

    About 8 months later, I knew I had to get it done. I wanted to feel whole.

    Started by brava-aFT recon in January, will be finished December.

    I'd wait until you are sure, may take some time. Give yourself all the time you need to make it right for you.

  • bluefin
    bluefin Member Posts: 50
    edited July 2015

    Thanks for all of the responses. I know part of it is I am just really burnt out on doctors and office visits. I stay at home with my son, so it's been challenging trying to find coverage for him. I have been very lucky to have lots of friends and family around to help, but this has already felt like such a long process and I'm feeling guilty for continuing to need someone to watch him when at this point there is no longer any evidence of cancer. Part of me just wants to get this all over with and get on with my life, but I know I do need to be patient and make sure I am making the right decisions, not just the convenient ones.

  • ual0307
    ual0307 Member Posts: 62
    edited July 2015

    I remember the guilt.

    Committing to reconstruction meant more copays, more medical travel and my husband having to help me through recoveries. Etc. etc. etc.

    I finally had a revelation that I deserved to have two breasts. And to feel like it was over. That's not a lot to expect. Everyone who loves you will understand. (Except my mother--who I know loves me, but we have never been on the same page

  • tangandchris
    tangandchris Member Posts: 1,855
    edited July 2015

    You are totally normal :)

    Right now I am in limbo on my recon, my TE's failed due to infection and after 5 surgeries and 3 rounds of IV antibiotics, I said enough is enough.

    I still don't know if I will go back and have it done, but taking a break was necessary for me. You have time to think about it ((hugs))

  • Myleftboob
    Myleftboob Member Posts: 1,469
    edited July 2015

    Bluefin


    Totally normal. After my UMX, chemo, herceptin (no rads) I waited a whole year to even start thinking about it. I was burnt out too from all of the doctor's appointments and needed a year off. Fast forward a year later again, I've met with 3 PS's. Everyone though I felt was pushing me into DIEP which I wasn't up for even though I have the perfect tummy for it. Then #2 said she could achieve a nice result doing a TD/lat flap. After much thought though I'm going to do the TE to implant and lift to the native breast. I'm glad I took my time and really checked into my options. I'm happy with my decision although I won't have the TE until October. Hopefully it will go well and if not I can change gears if need be. Like I said to my doctor, I'm not looking for perfection, they weren't perfect before. Best of luck with your decision

  • JJ62
    JJ62 Member Posts: 65
    edited July 2015

    Imediate recon was not an option for me, and I am happy with my decision to remain flat. Very early on I read of someone who waited years before pursuing recon, and found it reassuring that I could pursue it later if I felt I needed it. I am athletic and busy and appreciate being able to get on with enjoying my life. I don't anticipate pursuing reconstruction, and am glad to not have had pressure to. It is such an individual decision, but one that only you can make. Best wishes for a wonderful summer of healing and playing with your little boy!


  • Meow13
    Meow13 Member Posts: 4,859
    edited July 2015

    you can do whatever makes you happy. A good friend of mine went 16 years after her mastectomy and radiation. When I had my diep she decided to do it too. We are both happy with our choices.

  • SmartassSmurf
    SmartassSmurf Member Posts: 157
    edited July 2015

    Bluefin - I agree with what everyone is saying. So normal to have all these conflicting thoughts. You have time to think about it, so taking advantage of whatever mental health help the TEs are giving you is a great idea...we are all so different in our choices. We think we know what we want, and then we change our minds sometimes or find out we need something different than we thought we would want.

    For me, I have been on a teeter totter of thoughts (thankfully not actions) with my relationship to my breasts & reconstruction.

    I had nice biggish boobs before cancer. After diagnosis, I first had lumpectomies. I thought I would be able to get away with no reconstruction.

    Then they did not get a clear margin, and I agonized and researched while doing chemo as to whether I should try another lumpectomy or BMX. I ultimately decided BMX because of a number of things. I could not do immediate reconstruction because I was heading into radiation a month after my surgery.

    I thought I was ok being flat & I felt like I was going to stay that way. I did not want more surgery. I knew for me a prosthetic bra was not something I wanted, and never got one. When I went back to work in my professional clothing, nothing fit right. Because of being sort of concave on top, my shirts would all slide up. When I bent over, my shirts would fall forward and I could see down to my belt. People I did not know that well felt somehow comfortable enough to ask about my lack of reconstruction, and I hated that. My husband started reminding me to put my shoulders back because I was slouching more than normal to hide. My little chemo pot belly I have acquired stuck out further than anything else.

    It became obvious to me I was not comfortable in my own skin. I wish I had been. I just did not feel feminine (the no hair might have had some impact on that too).

    So, after 10 months of nothing on top, I had to have my ovaries out because of a tumor (not cancerous, yay!). I convinced my gyno and my Plastic Surgeon to share the OR and do both surgeries at one time. I got my PS to agree to try reconstruction on the radiated side without a flap procedure. After my first couple of weeks, I noticed immediately even with 100 ml on each side I felt more confident about my body. I did not know it would be that simple. Just that little bit helped shut people up, my clothes stay in place and I felt a little more whole.

    3 months later. I hate my tissue expanders. They hurt. The fills on my radiated side are excruciating sometimes. But now, my crazy mind has me a little greedy. If I am going to do this, I do not want all this pain for an A cup. My goal is to get to 400 ml on each side. I am in a lot of pain on the radiated side, and my husband thinks I am crazy to keep going. I only have 60 more ml to go on each side. My thought is I will be mad at myself if I quit before my goal. I have no idea why because they cannot tell you what 400 ml will be anyway.

    I am happy I am doing reconstruction despite the issues I am having. I now that like chemo and everything else, I will have my exchange and this too will end. The next chapter is whether or not I will do the tattooing. I don't know yet, but no hurry.

    Good luck in your decision. Forgive yourself if you change your mind on what is right for you. I hope you do get to squeak by without radiation, because that would make it all easier for you.

  • Erica3681
    Erica3681 Member Posts: 1,916
    edited July 2015

    Hi Bluefin,

    You've received many thoughtful comments, which show the many different feelings women have about reconstruction. Some women don't feel whole without reconstructed breasts. Others, like me (bilateral mastectomy in 2006), choose not to have reconstruction and still feel whole and feminine.

    For you, since you've already had TE's inserted, perhaps it would be worth at least doing a few fills and seeing how you feel about reconstruction then. If you do decide to have the TE's removed, you can (almost always) decide to pursue reconstruction at a later time (either implants or tissue recon).

    If you'd like more input from women who choose not to have reconstruction, you might want to check out my non-profit website, BreastFree.org. Along with information and advice, there is also a section containing Personal Stories and one with Photographs. In both these sections, a number of the contributors are younger women, like you.

    I'm glad there are so many options for reconstruction available and I considered some of them myself. But I do feel that these days women, especially young women, are urged toward reconstruction. Often doctors don't even mention that non-reconstruction is an option, too.


  • Cannec
    Cannec Member Posts: 7
    edited July 2015

    Completely normal. I'd originally wanted DIEP but it wasn't offered in my area (downfall of living in rural America - not a lot of options). I kind of feel like I got talked into TI and breast implants; didn't really have another option other than flat. On the plus side, I told myself, maybe DIEP would have been even more surgery and pain. With the TI I've had a LOT of pain after the surgical fill and haven't yet gone for my first real fill, dreading it. Plus I think I'm not liking my PS very much (which I sort of had that feeling but again, lack of options). Sometimes consider calling the whole thing off and going flat. Part of me thinks I'm only 42, and single, and someday when the kids are grown I might date again and having boobs would make me feel less self conscious. The other part of me thinks who am I kidding, I won't care to date by then nor care what anyone thinks of me.

    Today....I'm just going to keep going, day by day. If it becomes overly painful maybe I'll give up. But I want to at least try so I don't regret not trying.

  • pennsygal
    pennsygal Member Posts: 346
    edited July 2015

    Completely normal! For me, having chemo before surgery has given me more time to think about recon and the options. It is overwhelming! I had a consult with a PS last week who said because of rads, a flap surgery would be better for me. He also said it would be about a year from now for that surgery.

    I have felt throughout chemo like I have to make every decision right now about all aspects of treatment and recovery. I'm trying to slow down a little, and I hear you on the patience.

  • berlin42000
    berlin42000 Member Posts: 17
    edited July 2015

    Hi ladies. I have some questions I want to ask about recon vs not recon

    I have a tissue expander in my breast since mastectomy..it has killed me since day 1. It is too big and goes way over past the middle of my chest too far, it slides and moves and scrapes like sandpaper...I have a huge dimple gouge on the side my my armpit which feels like a stick gouging into me 24/7, and I have a pinched nerve by the incision I have to put a big sock wadded up under the top of my bra strap to try to keep any fabric from touching the pinched nerve, so I look like a freak when I go out..the TE is ttoally mishapen and totally hideous like a monster really I call it frankenboob. The doc put in 250 cc's at skin saving mastectomy and it is very close to the size of my remaining breast already. I have flatly refused all and any fills as I don't need it and I refuse any more pain needles that are not medically necessary. I am 61 years old, am not sexually active any longer and wil not be due to vaginal atrophy issues. At this point I want this horrible TE out of me. PS says I must wait 3 months from mastectomy date. OK

    So I am wondering if I just have a little implant exchange will it still fell like this damn TE? I am thinking about just having her take it out and sew it up but she will have to remove the excess skin. What is the least invasive approach? What is the least painful approach ... Does going flat have post pain issues like the TE does....man I hate this...wish I would have never done the TE. BUt need some advice on if I should small implant now or just sew it up? Any advice is appreciated.

  • Erica3681
    Erica3681 Member Posts: 1,916
    edited July 2015

    Hi berlin42000,

    I'm so sorry you're in so much pain from your tissue expander. I am someone who chose not to have reconstruction. Afterwards, I started a website, BreastFree.org, and have heard from many women who have had tissue expanders or implants removed because of continuing pain. In most cases, the pain went away or was greatly alleviated. But unfortunately, there are no guarantees.

    As far as whether exchanging the tissue expander for a permanent implant will help, again there are no guarantees, but many women do find their implants pain-free or at least much more comfortable than the TE's. Given that you already have your TE filled as much as you want, it might be worth at least trying out the implant. Then, if you still have pain, you could opt to have it removed.

    If you decide to try an implant, make sure that your plastic surgeon knows about all of your pain issues before the exchange. For instance, it's possible that the surgeon can release scar tissue around the pinched nerve at the time of the exchange, if that's what's causing the problem.

    If you decide not to go ahead with an implant, don't lose heart. Breast forms (prosthetics) can make you appear completely natural.

    Whatever you decide, I hope your pain problem is cleared up!



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