Choosing Not to Reconstruct

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  • Lunakin
    Lunakin Member Posts: 120
    edited December 2011

    "How soft" oooh, yes, that what's important to me now. Surgery and neuropathic pain and a bit of LE will do that to a body. My breasts weren't a huge source of sexual pleasure and usually were just too sensitive -- so the mx side has actually gained enough sensation back that I like touch there now. And to the brain, it feels as if it's coming from a rounded breast.  

    I have a friend who had BC a year after my dx. She opted for implants; not enough plumpness for a DIEP. Unfortunately they didn't tell her ahead of time that since the implants go under the pectoral muscles, they cut the muscles, and then sew attachments out of Alloderm which has cadaver tissue (supposedly all safe, just don't talk to an infectious disease specialist). Well, she discovered that she used her pec muscles for a lot more than the surgeon thought about. 

     So I'm holding out for something better and it may be just prophy losing the remaining one.  Whatever I'm comfortable with, that's the solution and I'm not in a rush.

  • PCBarbie66
    PCBarbie66 Member Posts: 84
    edited December 2011

    Hi Mary,

    I had my BMX with no reconstruction 8 weeks ago.  I went from Lumpectomy to a Mastectomy to a BMX in one week.  I cried for a night after I realized they both were going and then moved on with the decision you are making now.  I know everyone tells you this is a personal decision... I read the posts and researched as you are doing now...trying to make the best decision for me.  I do not regret my decision, I was never a tummy sleeper, I am very athletic/active and wanted the fastest route to a full recovery.  I also did not want to cut up any other parts of my body for reconstruction...I am 5'7 123 lbs...I wasn't going to remove tissue from my but...that I sit on everyday...nor remove muscle elsewhere or skin grafting...additional infections were a major concern for me and the entire reconstruction process seemed brutal.  Being I was unlucky to get the cancer in the first place, but be lucky enough to find it early...I figured I would use the luck I have left for the Chemo.  If you choose not to reconstruct, make sure you a have a therapist that is familiar with this type of healing, I found that my Surgean wanted me to reconstruct, but finally understood my reasoning behind not doing so, she even showed me her stitch work to prove she was worthy, normally a plastic surgeon steps in.  Also one of my friends who had a BMX with reconstruction - her boobs swell when she exercises, I don't have that, my swelling is in the tissue around the scars..if I over do it I have to rest and wear compression shirts to keep the swelling down, so I can do Physical Therapy.  Doing the laundry is not as important as being able to get full motion back.  I found comfortable compression shirts in Kohl's.  I am over the top extremely active, a "Ant's in the Pants" kinda person, ex...1st thing I did after surgery in the recovery, was to start waving my arms around and yelling to everyone that I could move them...I got Demerol shots to stop that.   Either way I know you'll do just fine.

  • mary625
    mary625 Member Posts: 1,056
    edited December 2011

    PCBarbie:  Thanks!  I know you're going to have the best of luck continue through chemo.  I am just finishing chemo so if you ever need any support going through chemo, feel free to PM me. 

  • Wordwrangler
    Wordwrangler Member Posts: 29
    edited December 2011

    I was told I could do what I want but my surgeon and Radiology Onc said wait a year. The Rad Onc said a year from the end of rads.

  • Momine
    Momine Member Posts: 7,859
    edited December 2011

    PCbarbie, that cracked me up about you waving your arms around in recovery. 

  • PCBarbie66
    PCBarbie66 Member Posts: 84
    edited January 2012

    Thanx Mary I'll keep that in mind..getting that call last Wednesday night cancelling the 1st Chemo session , really took the sails out of our little boat...but I'm trying to not think about it...

    Momine...the recovery nurse wasn't laughing with me!!  My surgean had scared the crap out of me that I may wake up and not be able to use my left arm...I spent a lot of time designing bandages to not use the arm (I know I never listen untill I'm in tons of pain or hurt myself).  She kept giving me Demeral-3 shots total...each time I woke up, I did the same thing...then I started noticing the beeping sounds...the machines I was hooked up to were reporting my heart rate was toooooo low..she then yelled at me and told me I had to cut this out, as my reps? were too low...I said well then stop giving my the &*^*^^ shots!!....new motto for me is to "Speak my mind, cause biting my tongue hurts too much"!

  • PLJ
    PLJ Member Posts: 373
    edited January 2012

    Actually, Barbe, 'seeding' is the *exact* term that both my PS and BS used to refer to stray cells slipping beneath the chest muscle during the TE procedure when one has immediate recon. Seeding happens during a variety of situations, from needle biopsy, lumpectomy to a mastectomy procedure. It doesn't happen all the time but it does happen. If they don't get all the cells during a mastectomy, when they cut through the chest muscle to insert TEs, the fluid and the cells slip through. Mastectomy never removes all the breast tissue.

  • PCBarbie66
    PCBarbie66 Member Posts: 84
    edited January 2012

    Microcopic Cells is always a concern..I had a Vacuum assisted needle core biopsy in the left (cancer side) and a needle core biopsy in the right (benign cysts).  Reconstruction, TE est.. was not an issue for me as I chose not to do any reconc..  My surgean and I discussed not cutting any muscles as I use them all day as a mechanic, auto body painter and driver and the recovery time for muscle repair was long and painful should I damage or tear them...  (of course she was going to remove any effected muscles, etc.. that turned up from the Lymphoscintigraphy shot) so I had no idea how I would wake up.  My Ultra sounds were blurry due to dense tissue etc...so there were a lot of unknowns....My Surgeon took great care not to even nick a muscle...she was really open to my concerns and fears and her husband (believe it or not) was explaining my driving duties and told her I had most definitely made the right decision for my career, in his opinion.  We are concerned with the chance pieces broke off and the "Pernieural invasion present" on the Pathology report.  We know that the BMX may not have gotton everything, and the Oncotyoe came back at 19..hence we opted for ACT Chemo with the "T" given last, once a week for 12 separate sessions to monitor the nerve damage this may cause...I am happy with the crew I have, shooting for the best possible outcome. 

  • Christine2000
    Christine2000 Member Posts: 176
    edited January 2012

    I also had neo-adjuvant chemo and was astounded by how may women in the chemo room with me were having far more problems from the reconstruction then from the chemo! that sealed it for me. I am extremely active, travel alot and have a young child. My surgeon fought me tooth and nail and kept insisting I'd be sorry if I did not reconstruct. 2 years later I LOVE my new body and have absolutely no regrets.

  • barbe1958
    barbe1958 Member Posts: 19,757
    edited January 2012

    PCBarbie, it was your respiration that the recovery nurse was worried about! To funny!!!! Like you said, quit giving me the Demerol, then!!!! hehehehehehe

    I have a habit of stopping breathing in recovery. Drives me nuts, but I'm used to waking up to the alarms and people around me yelling at me to breathe!

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

    Barbie, I can imagine the nurse didn't find it funny, but I love the image. 

  • Outfield
    Outfield Member Posts: 1,109
    edited January 2012

    My BMX was 7/1/2010, no reconstruction, and I am very happy with my decision.  My reasons for no reconstruction:

    1) Mammograms missed my tumour, and at the time of diagnosis I was stage III with a lump that couldn't even be felt if I was lying down, only upright.  I don't want anything interfering with my self-exams.  I want follow-up to be as simple as possible.  I don't even care if there is research data one way or the other, I don't want the anxiety I know I'd feel trying to examine more tissue or around the edges of things.

    2) I didn't want more surgery.

    3) I didn't want numb masses on my chest.  What I miss about my breasts is the nipple sensation and I wasn't getting that back, so why bother.

    4) I had always been unhappy that I wasn't comfortable without a bra on.  My breasts were just in the way a lot.

    My BS's practice tried to schedule me with a PS, but when I talked with the BS about it she didn't try to pressure me at all.  Actually said she'd probably do the same thing.  There is supposedly some research out there that women who have had reconstructions are better off psychologically, but I've never bothered to track it down because I reallyd don't think it's relevant to me.  Even if it is something most people choose, it's not for me.  

    I have thought about getting foobs for special occasions, but so far I haven't bothered.  I've adjusted my wardrobe and feel pretty good about how I look.

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

    Outfield, I saw  a couple of reference to that study about recon meaning better psychology. Thing is, I wonder who did the study and where. In any event, like you, I decided that even if it were true for most women, it was not likely to be true for me.

  • barbe1958
    barbe1958 Member Posts: 19,757
    edited January 2012

    Hmm, can't believe they are happier!!! They have a year to 2 years of surgery ahead of them for recon. The continued drama of fills and surgeries to tweak their look, then disappointment when they realize they aren't their "own" breasts at all, but lumps of fat (or implants) on their chest!! I found I got over the cancer diagnosis a LOT quicker by no recon!!! My scar is minimal and almost gone now, 3 years out. I still have the same scares about new lumps as someone with recon has, that doesn't change, but my "drama" was over 2 weeks after diagnosis!!

  • mary625
    mary625 Member Posts: 1,056
    edited January 2012

    Outfield--are you saying that you are gaining sensitivity without a nipple?

  • mary625
    mary625 Member Posts: 1,056
    edited January 2012

    I'm encountering some long pauses from those in the medical community when I say that I am considering or have decided not to have recon.  I meet with my BS on Friday, and I wonder what that will be like.  I get the sense that everyone seems to think that it is a peculiar decision, not that it matters what they think.  I find that reaction to be strange.  I never imagined that all patients would decide on recon. 

    My DH said to me today that doing the recon would be like trading one set of problems for another.  That pretty much sums it up in my mind.  I definitely don't mean to criticize anyone else's decision by saying that.  I wonder if because the insurance companies have to pay for this surgery, it has become more highly recommended by the medical community.

  • crystalphm
    crystalphm Member Posts: 1,138
    edited January 2012

    It interests me that doctors suggest reconstruction, it has never been mentioned to me! I wouldn't even have a clue what to do next if i were going that path.

    It makes me wonder if some doctors aren't sharing a practice?

    I did like your comment that recon is trading one set of problems for another, which is why i am not doing it. And i am getting to like the freedom of being breastfree....

  • barbe1958
    barbe1958 Member Posts: 19,757
    edited January 2012

    I read something recently and I`m sure I have the EXACT numbers wrong, but it was something like: in the US 30% of women get recon and only 20% in Canada. Yep, it was that LOW of numbers!!! I think the docs would LIKE us to get recon as that`s certainly an expensive and cool surgery for them.

  • riley702
    riley702 Member Posts: 1,600
    edited January 2012

    My BS didn't push recon at me and seemed perfectly OK with me not doing it. I love being flat; it's so easy to just slip on a tank top or cami and go. I have a few mastectomy bras and a nice set of foobs if I decide I want to wear them, but they've been sitting in boxes on the dresser for months. I like being done with the procedures and not having to go through months of fills or a long recovery from a DIEP procedure, with no guarantee of results. Boobs just aren't that important to me.

  • coraleliz
    coraleliz Member Posts: 1,523
    edited January 2012

    I was told that in the US, 50% of women reconsruct & in my geographical region, slightly higher.

    My DH thinks alot like mary625s, He said it was a "no brainer" "just one more thing to go wrong". I don't know what I would have done if he thought I should have had recon. It was the only appt he went with me to, I was glad he heard what the BS had to say. I had bilat BC & one side had nipple involvement & would not lends itself to a lumpectomy. The other side I could have had a lumpectomy. I had a BMX.

    I never consulted with a PS. I just couldn't see putting myself thru additonal surgery & recovery.

  • Outfield
    Outfield Member Posts: 1,109
    edited January 2012

    Mary, that was a typo.  I meant to say "wasn't."  

    In truth, I did get some kind of pleasurable sensation back in my chest despite being numb to light touch in a band about 1-1/2 inches wide along my incisions.  It's not anything like it was, but it's still very different than, say, my arm.

    I am astounded the numbers for reconstruction are that low.  I was diagnosed at age 44, and I wonder if those numbers vary by age.  It seems like it is mentioned everywhere, and I feel like some of the national organizations kind of push it.  I really want it to be available to to women who want it, but I would have been steaming angry if my BS had tried to talk me into it.

  • Pessa
    Pessa Member Posts: 519
    edited January 2012

    I'm a little over a year after BMX.  I didn't want any more surgeries and was worried about complications/infections that so many seem to experience with reconstruction.  I'm very happy with my decision.  I wear foobs most of the time and had no problem getting used to them.  My stomach protrudes a bit, so I look weird without them. 

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

    Mary, I hope your BS can be supportive of your decision. 

  • Starak
    Starak Member Posts: 536
    edited January 2012

    Outfield: Boy did you hit a chord for me. "It seems like it is mentioned everywhere, and I feel like some of the national organizations kind of push it.  I really want it to be available to to women who want it, but I would have been steaming angry if my BS had tried to talk me into it."   My thoughts exactly, should be readily available to those who want it and would be steaming angry if anyone had tried to talk me into it.  I do agree that I see a big push among professionals and the national organizations who seem to have bought in to a group think.

    In my mid 20's when I decided on sterilization, I had to fight the group think, tooth and nail to get it.  All the dire predictions of I would change my mind...... I am now past 60 and that would be when??  Yes, a far different decision altogether but similar when trying to fight another's pre-conceived ideas that they feel compelled to force onto others.

    Barbara 

  • chele
    chele Member Posts: 1,465
    edited January 2012

    Living bra free and loving it! At my age breasts are not really an asset anymore! Who wants fake boobs up under my chin at my age? And I sure didn't want to pay for new saggy age appropriate boobs. I felt I didn't need them, it would involve too much time and energy, and way too many miles of travel. All in all it just wasn't what I wanted to do and I've never regretted my decision.

  • alexandria58
    alexandria58 Member Posts: 1,588
    edited January 2012

    Hi.  Just joining in here:  I had a BMX in April, no recon, and I'm very very pleased with my decision.  My BS also pushed recon.  She told me that a woman doesn't feel like a woman without breasts.  Well, I feel very much like a woman.  I didn't want the additional surgeries or the additional risk, and my DH said, that if I get recon, but don't have any sensation there, what's the point?  I am also very active and was more concerned about function than anything else.  I have absolutely no regrets about not reconstructing.  I love going without a bra, and by the way, unless I tell people, no one seems to notice.  I've just had comments about looking thinner. 

  • Starak
    Starak Member Posts: 536
    edited January 2012

    Mary:  I hope you quietly in your heart make the very best decision for you, whatever in the end that decision turns out to be, and then stand up for yourself and not let anyone move you from what you know is right for you.  If in fact your final decision is to not reconstruct, it might be helpful to bring your DH for support and to project a united front.

    Barbara

  • Starak
    Starak Member Posts: 536
    edited January 2012

    I am beginning to see I was really fortunate to have a BS that did not have an agenda either way.

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

    "I am beginning to see I was really fortunate to have a BS that did not have an agenda either way."

    Yep, me too. That early DX and treatment plan time is so difficult and emotional. Not sure how I would have dealt with it, if my BS had been pushing recon. 

  • Nanaskids
    Nanaskids Member Posts: 17
    edited January 2012

    I rushed into reconstruction surgery with the saline implant and stretcher. The focus began to be on "building the boob" instead of curing me of cancer. Too many additional appointments with the Plastic Surgeon, alot of pain with trying to stretch the skin. You are right you look at the pictures and they never will be a matched set. I gained weight because of the Tamoxifen natural one became a C cup and the implant was a B cup had to purchase a cutlet to fill out my bra. I'd focus on getting into remission and then make the best choice for you.

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