need thoughts on reconstruction

crazylady55
crazylady55 Member Posts: 92
edited March 2014 in Breast Cancer #1
I had a right mastectomy. Because of the infiltration of the cancer and my need for radiation I could not have reconstruction at the time of the mast.

When I was told I had to have the mastectomy there was no question in my mind that I would have reconstruction. Now I am getting worried about whether or not to do it. I hate the way my body looks now but will I like it any better after another surgery or two. In the past year I have had 4 surgeries (colon surgery-not cancer, lumpectomy, port installation, mastectomy). Is there any reason other than self image to have reconstruction? I am not a vain person, I am very plain (I don't even wear makeup). Also, I am 53 years old so I will be using this body for a long time to come. My husband and I have been together for 36 years, he will be ok with whatever I decide.

The girls I work with think I am crazy to consider another surgery but of course none of them have had BC and none of them are a "cyclops".

I would like to hear everyones thoughts, if you have or have not had reconstruction.

Thanks for listening, I truly did not think this would be a hard decision.

Comments

  • CR1954
    CR1954 Member Posts: 1,390 Member
    #2
    Hi crazylady......
    Like you, I had right mastectomy, last July. I met with a plastic surgeon to hear what he had to say, but had already made my mind up that I DID NOT want to go through reconstruction. I just didn't want to face another surgery and recovery.

    I got my bras and prosthesis a few months ago. It looks fine. However, I find that every time I put it on, I am resenting it more and more. Not sure why.
    And even though two fitters spent over an hour with me, I find that after wearing it for a few hours, it becomes a bit uncomfortable.
    So when I am at home, I don't wear it...yes, the cyclops effect.

    So I am at the point where the "thought" of reconstruction has been niggling at my brain.

    But I honestly just don't know what I will end up doing. I will have to think long and hard about it.

    I am 55, btw.

    CR
  • phoenixrising
    phoenixrising Member Posts: 1,508
    #3
    I had a left mastectomy and
    I had a left mastectomy and they wanted to put in the expanders at the time of surgery. I opted not to at that time as I wanted to deal with one thing at a time. I've been using a prosthesis for about 2yrs now and they can be uncomfortable. I have been known to take it out when I'm on the computer and set it on the table or take it out when watching TV and start bouncing it around or playing catch with my husband. Gotta get some entertainment value out it. :) I still have discomfort at the surgery site but not as much as I used to. What has been bugging me are the clothes I can't wear because of the prosthesis. Summer dresses, sexy dresses that don't have to be that low but with any movement it opens a little and you can see the prosthesis. I have begun to think about reconstruction. I will for sure if I get bc in the other breast.
  • jk1952
    jk1952 Member Posts: 613
    #4
    I had a bilateral mastectomy

    I had a bilateral mastectomy and simulataneous DIEP reconstruction done in April. I knew that, if at all possible, I wanted the reconstruction done at the same time as the mastectomy, since I thought that I might not go through with the reconstruction if I had to wait (I wouldn't be ready for more surgery).

    I don't consider myself to be vain, but I wanted the reconstruction for a couple reasons. Number one was that we do a lot of sailing and swimming, and I didn't want to have to deal with a prosthesis. Also, my father had both legs amputated (when I was a teenager) and had prosetheses and I just had a lot of negative feelings about them from that. I'm 57, and I expect to be with my husband forever. I'm sure he wouldn't care one way or the other.

    I don't think that it's vanity when I say that I just feel a lot better about myself, having had the reconstruction.

    Joyce
  • zahalene
    zahalene Member Posts: 670
    #5
    Long-term perspective
    I lost one breast in '86 and the other in '88. So for 1 and 1/2 years I was one-sided. I found that somewhat difficult to deal with, but since I was only a B cup, it was doable. Actually, I find having none easier than having one. (I chose not to have recon).
    Just so you know, the 'breastless' issue has diminished greatly over time with me and I no longer have any angst about it at all. I wear prosthesis when I go out just to avoid unwanted attention, but as soon as I hit the door at home...zippp...off they come. If someone comes to the door without calling first, hey, they take what they get.
    I can't speak for reconstruction, but I would think the same would be true. After awhile you adjust to whatever you decide and get on with other stuff.
  • Ltalcott
    Ltalcott Member Posts: 119
    #6
    liking your new "breasts"
    I'm about four months out of my bilateral mastectomies with immediate DIEP reconstruction. I am just starting to feel like these "things" on my chest belong to me, are a part of me.

    I think in another year, I'll probably love them.

    They don't have the same shape as my original breasts--a little squatter with a larger base--but they are about the same size, 36C, which for me is pretty big. (I'm 5'1", 120 pounds.)

    I still feel stiff, hard, painful from the surgery, both in the chest area and the tummy, but I think it will take at least a year for that to go away--if not longer. I have another minor surgery scheduled the 4th of August to remove my "dog ears," to make nipples, and to tatoo the aerolas. No looking forward to that--except I sort of am.

    Lisa
  • crazylady55
    crazylady55 Member Posts: 92
    #7
    Ltalcott said:

    liking your new "breasts"
    I'm about four months out of my bilateral mastectomies with immediate DIEP reconstruction. I am just starting to feel like these "things" on my chest belong to me, are a part of me.

    I think in another year, I'll probably love them.

    They don't have the same shape as my original breasts--a little squatter with a larger base--but they are about the same size, 36C, which for me is pretty big. (I'm 5'1", 120 pounds.)

    I still feel stiff, hard, painful from the surgery, both in the chest area and the tummy, but I think it will take at least a year for that to go away--if not longer. I have another minor surgery scheduled the 4th of August to remove my "dog ears," to make nipples, and to tatoo the aerolas. No looking forward to that--except I sort of am.

    Lisa

    Thanks
    Thanks for all your thoughts. It is good to hear from others in the same situation.

    I don’t have to make a definite decision for a few more months because I just finished rad 2 weeks ago and the plastic surgeon said I should wait at least 4-6 months. My cancer surgeon said he would wait at least 6 months. There are some insurance issues if I wait too long but I am sure that is 1 year or more.

    The prosthesis I have is very uncomfortable. It did take over an hour to get the “perfect” fit but I think it is too heavy. I have started just putting a cotton prosthesis (the one they gave me right after surgery) in a bra with a pocket. The only problem is that it does ride up slightly, so I may stitch it into the bra. I am also thinking of going to the Dollar Store for one of Tasha’s footballs. At home I generally don’t wear anything.

    Sorry Zahalene you had to do this twice. I do think if I had the bilateral done I would probably not do reconstruction. Now the problem is my “God given breast” is a 36DD so I am very one sided. The physical therapist I am seeing says that some women develop back problems both from the lopsided weight and/or from the weight of the prosthesis on the shoulder.

    Anyway, there is just so much stuff to think about with this d*** (I did the editing for you censors) disease. I try hard to forget about it but right now it is difficult.

    Thanks again
  • Jenice
    Jenice Member Posts: 5
    #8
    need thoughts
    I just had a left mastectomy 2 weeks ago, and have an expander in. I opted for immediate reconstruction after watching my mom deal with a prothesis for more than 20 years. She hated it, and I dealt with one for a few months after a lumpectomy left me really lopsided.I decided I didn't want to do this for the rest of my life. Even though I'm only at the beginning of the process, I felt it was right for me. Choose whatever feels "right" for you.
  • Marcia527
    Marcia527 Member Posts: 2,729
    #9
    I had a right mastectomy in
    I had a right mastectomy in 2003. No reconstruction as the surgeon said I'd have to wait till after radiation. I never went back in to have it done. I am lopsided and some of my excess stomach fat is shifting to the right. I guess my body is adjusting. I just wear t-shirts with a open button up blouse over it or a vest. Maybe if I lose the belly it will decrease. I've just been wearing t-shirts around the house and I notice now that it doesn't bother me to go out like that. No one gives me a second look. If the t-shirt is baggy not as obvious.
  • GreeneyedGirl
    GreeneyedGirl Member Posts: 1,077
    #10
    Marcia527 said:

    I had a right mastectomy in
    I had a right mastectomy in 2003. No reconstruction as the surgeon said I'd have to wait till after radiation. I never went back in to have it done. I am lopsided and some of my excess stomach fat is shifting to the right. I guess my body is adjusting. I just wear t-shirts with a open button up blouse over it or a vest. Maybe if I lose the belly it will decrease. I've just been wearing t-shirts around the house and I notice now that it doesn't bother me to go out like that. No one gives me a second look. If the t-shirt is baggy not as obvious.

    Lefty
    ~left breast mastectomy, (recurrence, after a lumpectomy and radiation). My husband helped me decide on reconstruction based on emotions, lifestyle,personality (we've been married 24 yrs.). I had a latissimus flap procedure done with a saline implant. Just finished surgery 4 weeks ago. Saline because the implant is under a muscle and wouldn't feel any different than silicone. I feel great and am happy with my decision. I have chosen at this point to not go forward with nipple reconstruction because I feel it is not needed for me. I am happy with my results. It is a big decision, take your time to research and ask questions.
    Melanie
  • arbojenn
    arbojenn Member Posts: 118
    #11
    Been there
    Ten years ago, I had a mastectomy. After a couple of months as a cyclops, I opted for reconstruction. I have never regretted that decision. I now have a recurrence in that reconstructed breast and need to have it removed. Since reconstructing it AGAIN is out of the question, I am going to have the other breast removed to avoid that cyclops thing. I am glad I had the reconstruction the first time. It gave me ten years of feeling normal. If I had to go back in time, I would make the same decision. Reconstruction did NOT prevent my recurrence from being discovered, nor did it contribute in any way.
  • tasha_111
    tasha_111 Member Posts: 2,072
    #12
    arbojenn said:

    Been there
    Ten years ago, I had a mastectomy. After a couple of months as a cyclops, I opted for reconstruction. I have never regretted that decision. I now have a recurrence in that reconstructed breast and need to have it removed. Since reconstructing it AGAIN is out of the question, I am going to have the other breast removed to avoid that cyclops thing. I am glad I had the reconstruction the first time. It gave me ten years of feeling normal. If I had to go back in time, I would make the same decision. Reconstruction did NOT prevent my recurrence from being discovered, nor did it contribute in any way.

    Cyclops...LOL
    If I had been offered a match up at the time of my lumpectomy I might have taken it.....Either the lost one built back, or the well one reduced to match. I wasn't offered any reconstruction even though my insurance covers it. Now I'm not sure I would choose to do this. I have a Dollar Store Dogs' Toy stuffed into a padded Bra.....Hey don't laugh! It works, I even got leered at by a dirty ond perv yesterday.......YEAH! I'm Hot!

    LOL Hugs Jxxxxxxxxxxxxxx
  • bfbear
    bfbear Member Posts: 380
    #13
    tasha_111 said:

    Cyclops...LOL
    If I had been offered a match up at the time of my lumpectomy I might have taken it.....Either the lost one built back, or the well one reduced to match. I wasn't offered any reconstruction even though my insurance covers it. Now I'm not sure I would choose to do this. I have a Dollar Store Dogs' Toy stuffed into a padded Bra.....Hey don't laugh! It works, I even got leered at by a dirty ond perv yesterday.......YEAH! I'm Hot!

    LOL Hugs Jxxxxxxxxxxxxxx

    I had a dbl. mastectomy and immediate reconstruction done with silicone implants under the muscle, May 6th.
    They are still very solid, and they don't move unless I flex my muscles, which is pretty disconserting at this point. The centers are still open wounds that are slowly filling in (it's all numb so as gross as it looks, it doesn't hurt).
    I don't know what the future will bring as far as them getting softer and more relaxed. I am glad to have "foobs," I guess, because I'd probably be pretty short-tempered about the prostheses, but I'm not used to the wierd way they feel and look yet. I was told by the plastic surgeon to wait at least 8 months before judging them (!!). I am supposed to schedule the nipple/areola thing for September, but I think I'm going to wait awhile and see. I may just let that go...
    Obviously I have mixed feelings about the whole thing, but I know myself well enough to know that if I hadn't had the reconstruction I would not have been happy.
    This probably hasn't helped you at all. Sorry. But for the record, all my friends say I look great (so everything looks fine in clothes!!!)

    Good luck with whatever you decide!

    Gentle hugs,
    Debi
  • Noel
    Noel Member Posts: 3,095 Member
    #14
    tasha_111 said:

    Cyclops...LOL
    If I had been offered a match up at the time of my lumpectomy I might have taken it.....Either the lost one built back, or the well one reduced to match. I wasn't offered any reconstruction even though my insurance covers it. Now I'm not sure I would choose to do this. I have a Dollar Store Dogs' Toy stuffed into a padded Bra.....Hey don't laugh! It works, I even got leered at by a dirty ond perv yesterday.......YEAH! I'm Hot!

    LOL Hugs Jxxxxxxxxxxxxxx

    I didn't have a mastectomy,
    I didn't have a mastectomy, but, I wanted to wish you good luck in your decision!
  • crazylady55
    crazylady55 Member Posts: 92
    #15
    Thanks again
    Thanks for all the thoughts and advice. I never realized that this would be a difficult decision. After all the other "stuff" I have gone through this year I guess this seems trivial to my friends and extended family. so I really appreciate your in put.
  • BentleyBC
    BentleyBC Member Posts: 1
    #16
    bfbear said:

    I had a dbl. mastectomy and immediate reconstruction done with silicone implants under the muscle, May 6th.
    They are still very solid, and they don't move unless I flex my muscles, which is pretty disconserting at this point. The centers are still open wounds that are slowly filling in (it's all numb so as gross as it looks, it doesn't hurt).
    I don't know what the future will bring as far as them getting softer and more relaxed. I am glad to have "foobs," I guess, because I'd probably be pretty short-tempered about the prostheses, but I'm not used to the wierd way they feel and look yet. I was told by the plastic surgeon to wait at least 8 months before judging them (!!). I am supposed to schedule the nipple/areola thing for September, but I think I'm going to wait awhile and see. I may just let that go...
    Obviously I have mixed feelings about the whole thing, but I know myself well enough to know that if I hadn't had the reconstruction I would not have been happy.
    This probably hasn't helped you at all. Sorry. But for the record, all my friends say I look great (so everything looks fine in clothes!!!)

    Good luck with whatever you decide!

    Gentle hugs,
    Debi

    I will be having a bi-lateral mastectomy July 24, and opted for reconstruction with expanders/implants. Do you still have the expanders in, or have they put in the permanent implants? Was there much pain? Why did you decide on silicone?

    Sorry for all the questions, but I really need info. from someone who has had the procedure. I'm worried about making the right choice, but I really don't think I want to deal with prosthesis.
  • Terri5
    Terri5 Member Posts: 24
    #17
    crazylady55 said:

    Thanks again
    Thanks for all the thoughts and advice. I never realized that this would be a difficult decision. After all the other "stuff" I have gone through this year I guess this seems trivial to my friends and extended family. so I really appreciate your in put.

    When I went through all my
    When I went through all my 'troubles' of cancer, everybody was telling me to just have them cut off and then you don't have to worry about them anymore. Of course all these people were quite endowed, and I'm just barely a B. I always thought that if I was diagnosed I would automatically chose mastectomy, but when it really happened, it was a very difficult decision, and the same with the reconstruction, it took alot of thought. I felt that I was being silly and vain I guess, that this had turned into such a major problem for me.
  • Jeanne D
    Jeanne D Member Posts: 1,867
    #18
    Terri5 said:

    When I went through all my
    When I went through all my 'troubles' of cancer, everybody was telling me to just have them cut off and then you don't have to worry about them anymore. Of course all these people were quite endowed, and I'm just barely a B. I always thought that if I was diagnosed I would automatically chose mastectomy, but when it really happened, it was a very difficult decision, and the same with the reconstruction, it took alot of thought. I felt that I was being silly and vain I guess, that this had turned into such a major problem for me.

    Bumping this for Calleen.

    Bumping this for Calleen.
  • Calleen
    Calleen Member Posts: 411
    #19
    Jeanne D said:

    Bumping this for Calleen.

    Bumping this for Calleen.

    Thanks Jeanne
    So many different choices!!

    The book I read called "Reconstructing Aphrodite" has Women from ages 27 to 78.. All of their stories and reasons are as different as we are... I'm not expecting perfection... I am expecting battle scars..Believe me right now my breast are not pretty at all so what I come out with after reconstruction will be good for me... and I have a perfectionist for a plastic surgeon... so what ever they look like I will be happy to just be a survivor!!!

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