Prophylactic Mastectomy Months Later

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anniese
anniese Member Posts: 218
edited June 2014 in Living Without Reconstruction After a Mastectomy

I had a mastectomy on my right side in June of 2008.  Due to having radiation I was informed I would need to wait at least 8 - 12 months for reconstruction.  So, here I am 6 months out feeling pretty one-sided.  Running joke - the uniboober.  I have/had fairly large size breasts (36C/D depending on bra maker) and had to get a size 7 in my prosthetic to match the remaining boob.  I hate putting on the prosthetic, but once it's on I forget I'm wearing it most of the time.  I also hate the drop that happens when I take it off - the other side is in 'sag' mode.  I am fast approaching the time when I can get something done about my lopsidedness and am having a hard time making any decision.  I lean towards just removing the other side to make everything easier but have concerns about whether things will 'slip out of place' without the other real boob to hold stuff in place.  Can anyone share some insight on that.  Of course, the other concern is what will it look like to have nothing there.  At least now I still have half of what the world calls normal.  If I turn sideways in the mirror it looks okay...LOL!  I think it would be liberating to be able to go without anything and just be flat if I want.  Right now I can't go outside without something on the flat side because the difference is too much.  I love just running around in a Tshirt on my days off.  Answering the door like that can be tricky.  I found myself having boob envy for the first time this week.  A young girl with a large A or small B size cup was waiting on us in a restaurant and I found myself coveting her ability to wear a revealing top and have some cleavage.  How bad is that....?  I think my husband is wishing I would get minimal reconstruction on the mastectomy side and then have the other side reduced.  I cannot imagine going through what would be AT LEAST 3 surgeries to have that done.  I don't know how to explain to him my reluctance to do this.......  Any advice on all of this would be greatly appreciated.  Sorry for writing a book but this has been festering for a couple months now.

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  • ehall
    ehall Member Posts: 663
    edited December 2008

    What you're facing is a very personal decision.  I can only share my choice and why I chose a prophylactic mast. on my good breast.  I considered risk, cosmetic issues, and peace of mind.  It was long a very long year for me--with some dark moments.  In retrospect--I'm very glad with my choice and have no regrets.  Whatever you decide--do it because you want to!  Good luck---Erin

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  • nagem
    nagem Member Posts: 353
    edited December 2008

    My situation was a little different from yours, but I opted for a prophylactic mastectomy on the "good" side and really do feel relieved of the anxiety of not knowing what lurked within and find it convenient to be balanced. As for reconstruction, I've seen stats now that say as many as half of women are unhappy with their outcome. That seemed high for my comfort. Have you looked at breastfree.com? You might find it helpful in making your decision.

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  • lilith
    lilith Member Posts: 543
    edited December 2008

    Hi there.

    You are in a pretty similar situation as mine last year.

    I had a right-side mastectomy Jul 2007. Originally I was a 36 DD, and just like you I hated being so obviously loopsided, I disliked the breast form ("flop" on the floor as one forgets to ease it out of one's clothing...), the way it felt cold even in hot weather and sweaty against the skin. mega-yuk.

    On the other hand, I didn't want to go through a recon, only to find myself with a saggy baggy side and a perky one... and for me, if I touched the other side, it was obvious that I would have a bilat, also to reduce risks of recurrence.

    I was lucky in the sense that my onc opted for no rads. So last June I had the other side done, and at the same time matching silicones put in.

    The surgeon was fantastic, she went in the surgery room with multiple sizes decided to "try them on" and see what would work best. As during the initial mastectomy enough skin was left in planning for future recon, I didn't need expanders, and - lo and behold - today I have a firm and perky 36D to show for the effort (little effort frankly). I just got nipple 2 weeks ago "all I want for xmas are my nipples" sort of thing.

    I always thought that IF the surgeon had originally done a bilat mastectomy (as I asked back then) without recon, I probably would have stayed without any. I hated the "monoboob", not being flat.

    If you ask TimTam the access to the pic site, you'll find there my pics from before and after.

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  • mthomp2020
    mthomp2020 Member Posts: 1,959
    edited December 2008

    Hey, I'm hearing you!  By the way, I enjoyed the uniboob comment - I sometimes refer to myself as the "uniboober"!  It actually would be easier to be flat then have one breast.  I'm only a large A/small B, and I do miss being able to go braless.  Even as small as I am, it's still pretty obvious, at least to me.  I'm more self-conscious about that then when I was bald. 

    When I had my mastectomy, my onc was talking about doing radiation after surgery.  As I was already stage IV at that time, I kind of wondered about that.  As it turned out, I never did do any radiation.  I could have ended up doing immediate reconstruction if I'd known that.  Now, I just don't want to have the down time the reconstruction would entail.  I'm in remission, and I just can't see wasting my time with recovering from the surgery.  Otherwise I'd probably have reconstruction.  I do hate being lopsided. 

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  • Raye99
    Raye99 Member Posts: 1,350
    edited December 2008

    Hi -

    You certainly  have a lot to consider, Uniboober. Do you wear a hoody too? LOL.  There was a thread where a lovely lady posted pictures of herself in clothes with her prostheses and in the same clothes without the prostheses. I will see if I can find that for you.

    My situation was similar (except for breast size - I was an A cup); I had a L mast, followed by chemo and rads. Due to the rads, I cannot have the tissue expander and implant on the L side, so I would have to have very invasive recon, which I am not sure I even want at this time. Anyway, long story short, I had the other breast removed one year after I had my L mast. I wear breast forms in my mast bras and they stay in place fine and look great. As for how I look without them? My friends say I look "sporty"; some say I look thinner; some say they can't even tell. I don't look bad.  Flat? oh yeah! Bad, no. Oh, I want to mention, even with me having an A cup, the lopsidedness drove me crazy. I feel much better being symmetrical. Also, my risk for developing bc in the other breast is decreased significantly.

    Best wishes to you!

    Raye

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  • whippetmom
    whippetmom Member Posts: 6,920
    edited December 2008

    I am not sure why it would take three surgeries though, to get your some symmetry.  In one surgery they could either do:  A.  Expander on the right and a prophylactic mastectomy/expander placement on the left, or: B. Expander on the right with reduction/lift on the left.  The second stage exchange to implant or implants four to six months later, for most women, is an outpatient day surgery - going home the same day if there are no underlying complications. 

    You could also go with a permanent expander if you want just a little expansion - although you would want to discuss the success ratio of this procedure with your PS. 

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  • anniese
    anniese Member Posts: 218
    edited December 2008

    Thank you all for your replies.  I am sorry it took so long to get back to my post, but I had to deal with a family emergency that kept me away from the computer for a while.  Anyway - I appreciate your insights into the decisions you made.  I'm feeling pretty strongly that I will end up with the prophylactic mast on the left side and no recon.  I would dearly love to have nice perky (smaller) breasts but since I had the rads I have to do the very invasive recon on the right side and I just can't see submitting to that voluntarily.  Again - thanks for your replies.  Would love to hear from someone that did get the recon (after rads) with the invasive procedure.  It just seems like it would be so painful.

     And, whippetmom, it would be three surgeries because if I did recon I would just have the other side reduced and lifted.  They would first recon the right side and then would go back in about 6 weeks to 2 months later to either reduce or remove/reconstruct  the left side (in order to make it symetrical one the first recon set).  Then the whole nipple thing.........

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  • SuzyG
    SuzyG Member Posts: 5
    edited March 2009

    I'm replying to an older post, but was wondering how you have made out?  I had right mastectomy 3/07.  I'm very large, double DD cup.  Immediate reconstruction wasnt recommended for me and then I had radiation as well.  Looking into reconstruction recently I also heard I'd be a more challenging case.  I also didn't realize all that was involved so I've decided to wait at least another year.  Besides the fact that I have alot of weight I want to lose.  In the meantime, I've decided to look into prophylactic mastectomy on the other side.  First for piece of mind, and secondly, I hate this large breast I have left, which is a pain to try and match up with a prosthesis all the time. 

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