PBM and unsure about reconstruction

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farmerlucy
farmerlucy Member Posts: 3,985

Hello everyone - I am planning a prophylactic bilateral mastectomy in the near future. I am at peace with my decision due to family history (my mother and her sister died of BC at 29 and 47 respectively), dense and busy breasts, nearly twenty years of high risk screening already, two excisional biopsies in two years, the latest which revealed ADH and ALH, and a 50% risk assessment of developing BC in my lifetime. I am negative for the BRCA mutations.

 I guess BC was imprinted on me as a 4 year old child. I am not afraid of dying of breast cancer, I am more afraid of living through it and the effects it would have on me and my family.

I am 51 years old and have been married to a wonderful man for nearly 30 years. He loves me for me not my breasts. I have not yet met with the PS but will explore all reconstruction options. I am seriously considering no reconstruction. My passion is working at our country property, cutting trees, mowing, hauling brush, i.e. being very physically active. I am concerned that any of the reconstruction alternatives will limit me physically in terms of lifting and such. I am also concerned about damaging the breast implants if I decide to go that route. Also I know that multiple surgeries or surgeries that move muscles around are not for me. I would love to hear from ladies out there on both side of the reconstruction vs no reconstruction fence. Thank you!

Comments

  • NatsFan
    NatsFan Member Posts: 3,745
    edited December 2011

    Recon such a personal decision.  I opted for a DIEP flap recon at age 52 and am very pleased.  We have a rural cabin which requires a lot of work, much like your country property, and believe me I can hoist a chain saw with the best of them!  DIEP does NOT involve cutting or removing any muscle, so my abs are as strong as they were before surgery. However, any recon does involve surgeries and recovery periods.  For me, it was well worth it.  But other women have opted for no recon and are just as pleased.  You're smart to do your research first.  My suggestion would be that you get at least 2 opinions from different plastic surgeons who specialize in breast recon.  Surgeons who do implants tend to recommend that; surgeons who do DIEP tend to recommend that, etc.  Getting a few opinions means that you're getting information from more than one source to help you make your decision.  

    Johns Hopkins website has an excellent section describing various recon options in detail, complete with diagrams.  http://www.hopkinsmedicine.org/avon_foundation_breast_center/treatments_services/reconstructive_breast_surgery/

    Good luck!!

  • Sassa
    Sassa Member Posts: 1,588
    edited December 2011

    Hi,

    You will probably receive more responses if you post this on the reconstruction forum (opinions all different types of reconstruction) and the forum for those who opted to not do reconstruction.

     I have bilateral silicone implants.  I do not find that they interfere in any way with my active life style (biking, kayaking) or heavy duty gardening  (pruning, cutting vines, removing brush) and my quest to improve my core strength through training.  

    The modern silicone implant is pretty sturdy and difficult to rupture.  I receive massage routinely which means I am lying on my stomach while a great deal of pressure is applied to my upper back.  If anything, the stomach laying and pressure helps to prevent capsular contractions.

  • beacon800
    beacon800 Member Posts: 922
    edited December 2011

    I am so similar to you:  I had my mom and her Aunt die from BC, had LCIS dx after years of scrutiny on my dense breasts.  I am around your age.  I went with BMX and no recon. 

    What is great:  1) fast, fast recovery.   I had surgery 12/16 and by 12/31 was out with my husband dancing on New Years Eve (this is probably not recommended, but I did it anyhow).  2) zero pain.  I mean none at all, I have stubbed my toe for more pain than this surgery caused me.  I didn't even need tylenol.  Only thing that hurt was if I caught the drain tubes on something and that DID hurt. 3) no losses in range of motion or my active lifestyle which includes competitive dancing and horse riding.  4) minimal numbness.  They told me my whole chest would be forever numb.  This turned out not to happen.  I have numbness about an inch above and half an inch below the incision scars and even that description might be an overstatement.  For most of my chest I have normal sensation. 5) bras and foobs work very well.  I have a slim body and my natural breasts were A cup.  When I wear my bras and foobs I look excellent and better than before.  I can wear lower cut as the scars have a wide area of separation, they do not meet each other.  BTW, I did not have any sentinel node biopsies which no doubt aided all the recovery.

    What is different now:  1) I have no breasts and don't look as good when naked.  My ribs show more now than before.  2) I would be very self conscious in a gym changing room, if I were to go in one, and would have to make a plan cause I wouldn't want people to stare or anything. 3) I cannot use very revealing clothes as it doesn't look right since I have no cleavage.  But for me, I never had it before so it's not a big change.

    I do consider recon from time to time.  I mentioned it to my husband and he said, "what would you want to do that for?"  He probably has a point.  For me, I could live like this forever but it's nice to know that I could build up some boobs again if I choose.

  • Soccermom4force
    Soccermom4force Member Posts: 631
    edited December 2011

    Beacon,

    I lost my Mom to BC (2X survivor) during my treatment ( also 3 aunts dx'd) and we are BRCA-.

    I opted to wait 3 years to reconstruct and had a stacked DIEP in 2007-2008.

    I went to the Center for Restorative Breast Surgery in New Orleans (see NOLA in Sept. thread)

    I have no limitations and am very very happy with my results,

    Hope this is helpful!

    Warmly,

    Marcia

  • Fearless_One
    Fearless_One Member Posts: 3,300
    edited December 2011

    I think you should get recon.   I had considered not doing it, but I am single.   If I was married and had someone I loved that saw me naked, I would want to have new breasts.   But that's me.  There is no right or wrong here.

  • Beesie
    Beesie Member Posts: 12,240
    edited December 2011

    I had a single mastectomy and I had reconstruction - I would not have been comfortable not having it. But, having gone through that experience and having read the reconstruction forum on this board for close to 6 years now, my take on it is that it's a whole lot easier to not have reconstruction. Reconstruction is not a simple process. Some women breeze through it but most don't.  Usually more than one operation is required - and that's if all goes well. Often revision surgery is required.  The physical toll on your body, both short term (longer, more extensive surgery, additional surgeries, greater number of 'things' being done to your body, longer recovery time) and long term (the effects of scarring and, if you choose implant reconstruction, the effects of having implants put under your chest muscle) is much greater if you have reconstruction. Some women have few physical limitations or effects but others are not so lucky. You won't know which group you fall into until you are done. As for the results, some women are thrilled and some women are severely disappointed; the majority end up satisfied but live with imperfections and problems that they never expected and probably would never have thought that they would be okay living with. 

    If you are seriously considering not doing reconstruction and you have a list of reasons why reconstruction might not be right for you, my question is "why then are you considering reconstruction?  What do you think the advantages would be for you?" 

    My suggestion is that you read the Breast Reconstruction forum on this discussion board to get an idea of what reconstruction is really like, and the Living Without Reconstruction After a Mastectomy forum on this board, to get the perspective of those who chose not to reconstruct. 

    Good luck with your decision. 

  • Wabbit
    Wabbit Member Posts: 1,592
    edited December 2011

    I had a single mastectomy and did not even seriously consider doing reconstruction.  I was a barely B cup and maybe because of that, breasts are just not an important part of my self image.  I simply did not care enough to want to go through the surgeries.  I just wanted to be done with breast cancer treatment and all the doctor appointments. 

    I've got a nice flat light pink scar line and it does not bother me a bit to look at it.  My chest was numb for a year or so but most of the feeling has come back.  I knew I could do reconstruction later if I changed my mind but the only thing I might do different now would be to have the other breast removed also. 

    It took me some time to work out the perfect foob/bra combination and that was kind of annoying until I got it right.  Now I don't even think about it ... I just put on a bra that already has one side filled and I'm good to go. 

    But that is just me and I doubt that my lack of caring about the whole thing is common.  I was also 55 years old at the time and might have felt differently in my younger days. 

    In my opinion this is not a decision to be made based just on practical considerations ... there is an emotional side to this that you should consider carefully also ... and all of us are different.  There is no right or wrong. 

    Best of luck with whatever you decide.

  • cinnamonsmiles
    cinnamonsmiles Member Posts: 779
    edited December 2011

    I chose a bilateral mastectomy 1/11/11 with no reconstruction and am very happy with my decision. I love not wearing a bra! I do not miss the fungal infections under the breasts from being hot and sweaty in the summer. And I did not miss all the extra surgeries, dr. appts, discomfort, etc that I read about on the boards.

    It is not a total piece of cake not having breasts though. I do miss them sexually occasionally. My partner also told me he is not with me for the breasts and I totally believe him. He has been such a supporter for me and helps/ed me deal much better.

    I have heard that with some who have reconstruction they lose the feeling in their breasts. I am not sure if all do. I,however, 11 months later, have feelings on my chest that I can get enjoyment out of.

    As a side note, for some reason, and I never asked, my breast surgeon left little fatty what I call "pseudo breasts" and I notice that since I gained weight, they are a tad bigger, but still small enough that I don't need a bra. I was terribly upset at first, because I wanted to be totally flat. But I don't mind so much now, because my partner gets to see "pseudo cleavage" that he likes.

    I am not sure I could go through all the extra work for reconstruction. Even though I had a very early cancer, for some reason, it gives me piece of mind not to have any breasts. (I do realize that the reconstructed breasts may not be any or very little  breast tissue depending on nipple sparing, etc). In my warped little view, I feel better.

    I wish you luck in your decision. I do agree that it would be a good idea to read threads for those who chose reconstruction and those who didn't. There is a lady on here that has even made a website for mastectomies with no reconstruction. I can't remember the website, but her name is erica and she posts in Living without reconstruction after mastectomies

  • Moderators
    Moderators Member Posts: 25,912
    edited December 2011

    Hi farmerlucydaisy,

    As some of the ladies here have suggested, you may find posting in some other forums helpful! Here are the links:

    Hope you find the answers your seeking!

    --The Mods

  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited December 2011

    Thank you all for your kind and helpful responses!

    Natsfan - The Johns Hopkins video may be the lifeline I need.

    Beacon - So good to hear of your quick recovery.

    I am in insurance limbo land right now. I checked the BCBS coverage and I'm pretty sure I qualify on several accounts. The Dr's office just needs to get it pushed through,

    Thanks again to all!

  • vmudrow
    vmudrow Member Posts: 846
    edited December 2011

    You story is similiar to mine, although my mother, is still alive.  I had an aunt and cousin pass away from bc.  BRCA negative, but diagnoised with ALH at age 49, I was done with the constant testing etc.  I did have reconstruction, nipple sparing surgery with implants.  The surgeries were not that bad for me and I have been very happy with the results.  Good luck and I'd be happy to answer any questions.

    Hugs, Valerie

  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited December 2011

    Valerie - How was your recovery? How long until you were back to normal? Did the implant surgery compromise any muscle strength? Thanks so much!

  • vmudrow
    vmudrow Member Posts: 846
    edited December 2011

    farmerlucydaisy - It does take 6 weeks before I could start back at the gym, playing tennis etc.  I was able to walk, spin after a few weeks.  There is just no lifting arms above head or anything very heavy for the 6 weeks.  Same after the exchange surgery.  There are three things that the plastic surgeon never wants me to do, because of the chance of implants migrating outwards - push ups, flies and bench presses - he doesn't specifically want the pec muscle built up.  All other exercises are fine, along with lifting weights, except the ones mentioned.  I don't feel my muscle strength has diminished - I play tennis, bike ride and go to the gym (classes and weight training). 

  • Fearless_One
    Fearless_One Member Posts: 3,300
    edited December 2011

    Farmer, I had the same thing (TE's and implants) and was back to work in 3 weeks, for what it's worth.

  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited December 2011

    Fearless - Do you have any restrictions regarding lift/pulling/ mowing. I am caretaker for our 15 acre country place so I regularly clear brush, use the chainsaw, mow, dig. Your thoughts?

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