DeConstructing?

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rseventeen
rseventeen Member Posts: 16
edited June 2014 in Living Without Reconstruction After a Mastectomy

Hi ladies,

I am on the fence and every day it changes.  Today, I am leaning towards deconstructing.  I am driving myself crazy with all of this.  

Long of the short: BXM with TE placed 4/2010, Exchange surgery 10/2011.  Left side ( radiated) is failing and quickly!

I have ruled out almost all the reconstruction options that I have, which is not much.  I am on the schedule for surgery 12/17 for a LAT Flap but I am second guessing my decision.  I have discussed deconstruction with my PS and she will help me achieve that if I want but she is worried that I will be unhappy with my results.  

I am an athlete- mountain biker/racer and pilates instructor.  It is so hard for me to get past this muscle displacement.  

I am turning 39 next month.  I am in a loving relationship and really all I want to do is feel good and get on with my life.  

What is stopping me?!  Regret, Fear... maybe all of that?  Something just is not settling right with my regarding the LAT Flap surgery.

I am not into prostetics.  It would probably annoy me.   

I know a lot of you have chosen no reconstruction but what about deconstructing?  They have already stretched muscle and skin so it may not look as 'pretty' as I would like.  

I tried to find a thread on this so if I am repeating a topic, sorry. 

Rebecca

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  • Momine
    Momine Member Posts: 7,859
    edited December 2012

    I like the idea of the flap surgeries, in theory. When it comes down to brass tacks, I don't like the idea of messing with muscle, and I am not even an athlete, just a normally active person. In truth I don't even like the muscle-messing involved in the implant surgery, so I get your reservations.

    A lot of us wear "alternative" foob arrangements that do not include iron mastectomy bras from last century or heavy foobs. 

    My thinking is that if you are not sure about the lat flap, this close to surgery, then it may not be a great idea. 

    What happens if you deconstruct, have the PS fix things as nicely as possible, and then a year down the road decide on the lat flap after all, is that a possible plan?

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  • rseventeen
    rseventeen Member Posts: 16
    edited December 2012

    Momine - thank you for your reply.

    You make a very valid point about being so close to surgery and still being so unsure. I think that is why I am really researching deconstructing, again.

    I could go back to it later but it would involve a TE again and I have no desire to do that again. I think I could do the other flap surgeries down the line but that is also very limited. I do not have belly tissue to donate and my legs are off limits. That brings me right back to where I am.

    I don't regret doing the reconstruction but if I knew then what I know now...can't look in the rear view mirror or I will just make it worse for myself.

    I know that I can do my thing without a lat muscle but there are no guarantees how my body will react.

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  • Momine
    Momine Member Posts: 7,859
    edited December 2012

    Oh! I did not realize that TEs were involved in the lat flaps as well. That stinks. Sorry about my ignorance, as you can tell I never went all that far down the recon road. I really thought that with the flaps, you were spared the whole TE ordeal.

    It may be time for a heart to heart with your PS. Another option might be to remove the current "stuffing," repair the pec muscle (or whatever they have to do there), leave the skin, even if it doesn't look good, give all that time to settle down and revisit again in 6 months or so to decide whether you do the flap or clean up the skin issues etc.

    We face some crazy decisions with this stupid disease.

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  • rseventeen
    rseventeen Member Posts: 16
    edited December 2012

    Well, the TE would be needed only if I removed my implant and waited to go back at a later date.  If I do it now, I can keep the 'reconstruction' that is already there and they can just add a regular implant during the lat surgery.  

    I have had so many conversations with her and she really is leaving this up to me and trying to be helpful.  I may try to talk to her again tomorrow.  

    I was hoping to find some others that might have deconstructed?? I do not know if repairing the pec muscle is even possible   

    Thank you, Momine for your kind words and thoughtful responses.  It really is nice to 'talk' it out with someone that doesn't know me but understands the challenges we face with this disease.  

    R 

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  • Momine
    Momine Member Posts: 7,859
    edited December 2012

    Just sorry I can't be of more help. There are some deconstructed ladies on here, but maybe they have not seen your posts. 

    So the lat flap itself is not enough to make the boobs, and thus the need for an implant to augment? That sounds really involved.

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  • Erica3681
    Erica3681 Member Posts: 1,916
    edited December 2012

    Hi, rseventeen,

    I can relate to your situation, though I took a different initial route. When I faced a BMX, one side had already been radiated. I was leaning toward not reconstructing but wanted to check out my reconstruction options. I had heard that the failure rate for an implant after radiation was high, so I ruled that out. Like you, I'm slim and didn't have enough tummy fat for a bilateral DIEP. I also explored GAP flap surgery, though I didn't have much to spare in that area either. The plastic surgeon suggested that lat flaps would be my best option. Like you, I was very concerned about losing back strength and also didn't really want implants, which would have been necessary with the lat flap if I wanted to be anything larger than AA size. So in the end I went with my intial impulse and didn't have reconstruction. 

    You might spend some time reading the Latissimus Dorsi Flap thread on the Breast Reconstruction forum. Some women have been happy with their results, but others have issues of pain and muscle weakness.

    When I was trying to figure out what to do, my breast surgeon gave me advice which I found very helpful. She basically said that if I wasn't sure about reconstruction, I should wait, as the most unhappy patients she'd had were those who were on the fence and went ahead and then regretted it. Your case is obviously different, but as you approach a second attempt at reconstruction, perhaps it would be better to try living flat for a while and see how you like it before bringing a muscle around from your back. If you ultimately decided you wanted to have reconstruction, another option for you might be a GAP flap, which uses posterior fat (but not muscle). 

    Regarding prosthetics (breast forms), it took me a lot of trial and error, but I've found some forms that look good and are very comfortable. I go flat at home and when I exercise but I prefer the way I look in clothes with some shape, so I wear forms when I go out. My husband doesn't care either way, so it's really for myself that I wear the forms. For me, not having reconstruction has worked out well.

    I started a non-profit website, BreastFree.org (click on the URL below). There is a Personal Stories section on the site and a couple of the stories are by women who deconstructed--Susan's Story and Joan's Story. You might find them worth checking out.

    Best of luck. Please keep us posted about what you decide to do.

    Barbara

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  • rseventeen
    rseventeen Member Posts: 16
    edited December 2012

    Momine- you are very helpful and thoughtful for even trying to help me sort this out.  Thank you!  

    Barbara, some wonderful advice- thank you! I like what your breast surgeon had to say.  I feel like that is exactly where I am right now- Unhappy with my choice.  I cannot look back so I have what I have.  I can only control what surgeries I sign up for next.  I have emailed my ps this morning to advise her that I am deconstructing.  I am waiting to hear back.   I cannot go through with this LAT surgery, not now.  I actually discussed the GAP with a micro surgeon and if I decide, down the road that is the right fit for me, I can revisit it.  I didn't like the idea of possible failure again or messing with my legs in any way.  For now, I am exhausted with it all.  My bf and I can hardly discuss anything else. It is taking over!  So, that is that.  I am sure there will be sadness but I am also hoping for a bit of freedom from this.  I had visited your website and found it so helpful.  That is a wonderful thing to be able to see all that strength and hear the stories.  

    I will keep you posted. 

    Rebecca 

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  • Momine
    Momine Member Posts: 7,859
    edited December 2012

    Best wishes for an uneventful surgery, and we will be here for you after.

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