Can I get your opinion?

Gabe N Abby Mom
Gabe N Abby Mom Member Posts: 2,413
edited March 2014 in Breast Cancer #1
I have 4 chemo treatments left and then mastectomy. I've been thinking and reading a lot about reconstruction. And I'm trying to decide what is right for me. My husband has said "whatever you want" (gotta love that!).

So what I'd like to know is, are you happy with your reconstruction/no reconstruction decision?

Thank you for sharing.

Linda

Comments

  • webbwife50
    webbwife50 Member Posts: 394
    #2
    Hi Linda
    After being dxed with tnbc,(I believe I saw you are also tn)in May of 09, I had bilat. mast. in June 09, the did a total of 8 rounds of chemo, then in Dec. did tram-plam recon.. I am happy with the results so far. I have not had the nipples done yet but plan to around January. Mine are much smaller than the originals, I love that, and I never wear a bra. I spent a little over 6 month without any breasts and considered staying that way but for me it was just to much hassle dealing with prosthetics and puffys. Hope that helps.
    Love...Alison
  • Marcia527
    Marcia527 Member Posts: 2,729
    #3
    I went through treatment in
    I went through treatment in 2003/2004. I don't know why some can start at the same time as mastectomy but he said I'd have to wait till after radiation. A year after I started thinking about it but the surgeon had retired and I'm not crazy about surgery so decided not to have reconstruction. At times I regret this because I feel abnormal. Especially now when I have a sister who is just finishing her reconstruction. I guess it depends on how you feel about your self image. Talk to your surgeon and insurance company and see if you could have it done later if you decide not to do it now.
  • webbwife50
    webbwife50 Member Posts: 394
    #4
    Marcia527 said:

    I went through treatment in
    I went through treatment in 2003/2004. I don't know why some can start at the same time as mastectomy but he said I'd have to wait till after radiation. A year after I started thinking about it but the surgeon had retired and I'm not crazy about surgery so decided not to have reconstruction. At times I regret this because I feel abnormal. Especially now when I have a sister who is just finishing her reconstruction. I guess it depends on how you feel about your self image. Talk to your surgeon and insurance company and see if you could have it done later if you decide not to do it now.

    never to late?
    My ps mentioned that he was going to be performing recon on a woman who had had mast. 25 yrs ago. My understanding is that it is covered no matter how long ago you had mast. Probably because they know a woman always has the peragative to change her mind! lol
  • Miss Murphy
    Miss Murphy Member Posts: 302
    #5
    Opted Out
    Hi Linda!

    This is such a personal decision and each of us on this journey are so different. My husband was like yours, whatever I decided was OK with him. And I'm sure the fact that I only have one boob bothers me more than him. There are lots of times I'd like to look "normal" undressed ( when I have my fake girl on, no one can tell) but even after 2 1/2 years from my surgery, I still don't want all that seems to be involved with reconstruction. I don't want more surgeries if I can help it, I don't want the risk of getting an infection and I don't want to spend my time on doctor's appointments dealing with this. It may be my age - I'm 60 - if I were in my 40's for example my decision might have been different. My husband and I have been married for 38 years, if I weren't in this relationship, my decision may have been different. This is all just ME. You have to do what you feel is right for you after getting as much info as you can. Good luck with whatever you decide to do.

    Hugs, Sally
  • Rague
    Rague Member Posts: 3,653 Member
    #6
    Talk to your Drs
    My Drs all said to wait a year before talking about reconstruction. I'm glad I didn't have any at the time of surgery. I got a very large seroma that was 'around' for months. Rads burned me very BAD. i don't want to even think how bad 'things' would have been IF I had had recon at that the time of rad. mod. mast. When I see my surgeon on Oct 18th (3 days less than a year since surgery) I intend to talk with him about the possibility of doing it now. According to what I've been told and have read, IBC protocol is often different than other types as it is so aggressive with a very bad 'survival rate' as compard to some other types.

    Talk to your Drs - they know your situtation. We are all so different - even when having the same DX.

    God Bless!

    Susan
  • jo jo
    jo jo Member Posts: 1,175
    #7
    I had a bilateral
    I had a bilateral mastectomy, with expanders and in mid july i finally had my implants put in and i love it and dont think i would ever regret it. Even thou it wasnt a smooth ride but it was so worth it to me.
    On that same note as far as the nipple reconstruction is concerned i dont think i will do that cuz i really dont think its worth it to go thru skin graph ect to do it and hopefully it will take...nope i think i will just have them all tattooed on ...this way i wont have to wear a bra if i dont want to!
    Good luck in your decision!
  • shy violet
    shy violet Member Posts: 167
    #8
    Hi Linda, I'm a no
    Hi Linda, I'm a no reconstruct...was diagnosed late and odds high for recurrance. OMG I was in California at the time where it is the must have item....I got SO tired of the you must reconstruct...I held firm that it was pointless if the cancer came back...I stood firm and said no, they weren't happy, cancer came back...stand strong whatever you decide...
  • VickiSam
    VickiSam Member Posts: 9,079 Member
    #9
    shy violet said:

    Hi Linda, I'm a no
    Hi Linda, I'm a no reconstruct...was diagnosed late and odds high for recurrance. OMG I was in California at the time where it is the must have item....I got SO tired of the you must reconstruct...I held firm that it was pointless if the cancer came back...I stood firm and said no, they weren't happy, cancer came back...stand strong whatever you decide...

    Linda .. I opted to have a bi-lateral with immediate
    breast reconstruction .. tissue expanders, with bi weekly fills .. and exchange to 'saline' breast replacments .. As Jo Jo stated there are bumps in the road, some women have them, while others do not. I will NEVER regret my decision, and I am extremely Happy. I too will not be going in to have 'nipples' created, and finishing my new ta-ta's with 3D tatt's. Fire and Ice (stripper names for the new girls!) are doing great, and I opted for a C cup.

    I consider myself a young women -- early 40's, and felt this was the best decision for me and my personality.

    Please note .. regardless of your decision, you have the right to have reconstuction or removal of new breasts at any time in the future.

    New thing .. your nipples can be transferred .. Yep .. during reconstruction out here in Southern California .. I was asked over and over again if I wanted to tranfer my nipples during my reconstruction surgery .. I said absolutely 'NO' thank you! I didn't want 'Fire and Ice' to get saddled with any traces of cancer .. DCIS and IDC were my breast cancer .. diagnosis ..

    Research, go on line .. view photo's .. Happy Hunting!


    Vicki Sam
  • Annette 11
    Annette 11 Member Posts: 380
    #10
    NOT FOR ME
    LINDA, I HAD A BILATERAL MASECTOMY IN AUG. I SAID IT THEN AND I'LL SAY IT NOW. NO RECONSTRUCTION FOR ME. I HAVE BEEN MARRIED FOR 43 YEARS AND WE MADE THAT DECISION TOGETHER. I DON'T WANT MORE SUGERIES AND I AM AFRAID OF INFECTIONS OR ANLYTHING THAT MAY COME AS A RESULT OF THAT, AND I DON'T FEEL LESS BECAUSE THE GIRLS ARE GONE. I WILL GET A FALSE BRA (WHAT EVER THAT'S CALLED) I HAVEN'T LOOKED INTO THAT YET. I JUST HAD 1 CHEMO SO FAR. SO FOR ME, I KNOW I MADE THE RIGHT DECISION. FOR YOU THAT IS SOMETHING THAT YOU HAVE TO DECEIDE AND BE SURE AND THEN ACCEPT WHAT EVER THAT IS AND THAT'S IT, GO WITH IT.
    WISHING YOU THE BEST.
    ANNETTE
  • Evoling_butterfly
    Evoling_butterfly Member Posts: 57
    #11
    Thanks
    Thanks for asking this question, Linda. I'm 31 and I have three more chemo treatments to go. Then I will have a bilateral mastectomy but my doctor wants me to wait on reconstruction until I finish radiation. The reconstruction process freaks me out but for myself I think it's a journey I must take. I still think sometimes about saying forget it but I'm young and single..That's an emotional road I don't want to travel at least that's how I feel right now
  • jk1952
    jk1952 Member Posts: 613
    #12
    Evoling_butterfly said:

    Thanks
    Thanks for asking this question, Linda. I'm 31 and I have three more chemo treatments to go. Then I will have a bilateral mastectomy but my doctor wants me to wait on reconstruction until I finish radiation. The reconstruction process freaks me out but for myself I think it's a journey I must take. I still think sometimes about saying forget it but I'm young and single..That's an emotional road I don't want to travel at least that's how I feel right now

    Linda, I had a bilateral

    Linda, I had a bilateral mastectomy with immediate DIEP reconstruction in April 2009, after a cancer recurrence. I had the DIEP reconstruction because I had a lumpectomy and radiation in 2000, and this was the reconstrustion that was recommended for someone who has had radiation. I am very happy with the results, and I'm very glad that I did it.

    Joyce
  • Gabe N Abby Mom
    Gabe N Abby Mom Member Posts: 2,413
    #13
    thank you
    Thank you all for your input. I still have many questions to answer before making my decision, but it helps to hear about your experience.
  • CypressCynthia
    CypressCynthia Member Posts: 4,014 Member
    #14
    Gabe N Abby Mom said:

    thank you
    Thank you all for your input. I still have many questions to answer before making my decision, but it helps to hear about your experience.

    my experience
    I am weird in that, when I had breast cancer 23 yrs ago, I initially had a left-sided mastectomy without reconstruction. I was told that I was not a candidate for implants as the implants have to be able to be placed under more than just skin and my tumor was large so that was all that was left. I then had reconstruction with a tram flap. Basically, what this means is that a flap (with blood vessels still attached) was cut out and then tunneled under my ribs and pulled up to where it would be formed to make a new breast. The flap did include part of a muscle.

    Then the diep "free flap" was actually pioneered by the same plastic surgeon who did my first surgery. With this amazing procedure, a flap is cut free from the abdomen and then microsurgically attached to tiny blood vessels under the sternum. The recovery time is much shorter and, because no muscle is used in the flap, you are also less likely to get a hernias.

    In about 1993, I had my right breast removed preventively after 2 of my sisters then had breast cancer. This time, the same ps did a SGAP procedure. My abdomen could not be used because of the previous surgery, so this time he cut out a chunk of my butt (skin, tissue and blood vessels) and then microsurgically attached it to the blood vessels under my sternum. Same procedure as DIEP but uses buttock instead.

    The "free flap" was markedly better for me than the tram. Much, much less pain and the result is beautiful! Much prettier than the other girl! Wish I had been able to do a bilateral diep but....

    Anyway, am I glad I did it? Yes! For me, someone who loves to swim and loves the outdoors, it was the only way. I am so much less self conscious and I feel better about myself. I know it is not for everyone, but it was the answer for me.
  • Mama G
    Mama G Member Posts: 762
    #15
    CypressCynthia said:

    my experience
    I am weird in that, when I had breast cancer 23 yrs ago, I initially had a left-sided mastectomy without reconstruction. I was told that I was not a candidate for implants as the implants have to be able to be placed under more than just skin and my tumor was large so that was all that was left. I then had reconstruction with a tram flap. Basically, what this means is that a flap (with blood vessels still attached) was cut out and then tunneled under my ribs and pulled up to where it would be formed to make a new breast. The flap did include part of a muscle.

    Then the diep "free flap" was actually pioneered by the same plastic surgeon who did my first surgery. With this amazing procedure, a flap is cut free from the abdomen and then microsurgically attached to tiny blood vessels under the sternum. The recovery time is much shorter and, because no muscle is used in the flap, you are also less likely to get a hernias.

    In about 1993, I had my right breast removed preventively after 2 of my sisters then had breast cancer. This time, the same ps did a SGAP procedure. My abdomen could not be used because of the previous surgery, so this time he cut out a chunk of my butt (skin, tissue and blood vessels) and then microsurgically attached it to the blood vessels under my sternum. Same procedure as DIEP but uses buttock instead.

    The "free flap" was markedly better for me than the tram. Much, much less pain and the result is beautiful! Much prettier than the other girl! Wish I had been able to do a bilateral diep but....

    Anyway, am I glad I did it? Yes! For me, someone who loves to swim and loves the outdoors, it was the only way. I am so much less self conscious and I feel better about myself. I know it is not for everyone, but it was the answer for me.

    I felt I had enough to deal with....
    and decided to delay until further notice. I have heard and read too many weird stories, doubt if I'll ever do it.
  • cahjah75
    cahjah75 Member Posts: 2,631
    #16
    Linda
    I had bilateral mastectomy June 2010 and did consult a ps prior to surgery. My surgeon said I would have to wait til after rads but I wanted to know my options. The ps said I could have implants done 20 years from now if I wanted. My mastectomy was my 12th surgery in 4 years and right now the thought of more surgery and the possibility of infection is not something I look forward to. I'm learning to live with boobs in a box. Ideal, no! But doable. My husband said he supported my decision. However, I'm 61 and have been married 35+ years. This is a very personal decision and I really do think it depends on your age and where you are at in your life. Best wishes on making a decision.
    {{hugs}} Char
  • DebbyM
    DebbyM Member Posts: 3,289 Member
    #17
    webbwife50 said:

    never to late?
    My ps mentioned that he was going to be performing recon on a woman who had had mast. 25 yrs ago. My understanding is that it is covered no matter how long ago you had mast. Probably because they know a woman always has the peragative to change her mind! lol

    I had a lumpectomy, but,
    I had a lumpectomy, but, wanted to wish you good luck in whatever you decide to do.

    Hugs, Debby
  • hoop77
    hoop77 Member Posts: 84
    #18
    Hi Linda,
    I had bilateral
    Hi Linda,

    I had bilateral in May with immediate reconstruction with those nasty expanders. Had my exchange surgery Aug 26th and I am so happy with my choices, both the mastectomy and reconstruction. I too had a very supportive husband who just wanted the cancer taken care of. It's a very personal choice and whatever you decide to do will be the right thing! Best of luck to you in your journey!
  • Gabe N Abby Mom
    Gabe N Abby Mom Member Posts: 2,413
    #19
    Many many thanks!
    I continue to be impressed with the support and sharing here. I haven't made a decision yet, still need to do the consults, but it is nice to hear that you are all happy with your choice. It's true there are some horror stories out there, and I've seen some pretty scary pictures, so the confidence you've given me is invaluable. I do know that once I make this decision, I will be well armed with information thanks to all of you.

    Linda
  • Heatherbelle
    Heatherbelle Member Posts: 1,226 Member
    #20
    Gabe N Abby Mom said:

    Many many thanks!
    I continue to be impressed with the support and sharing here. I haven't made a decision yet, still need to do the consults, but it is nice to hear that you are all happy with your choice. It's true there are some horror stories out there, and I've seen some pretty scary pictures, so the confidence you've given me is invaluable. I do know that once I make this decision, I will be well armed with information thanks to all of you.

    Linda

    Hi Linda,
    I had a bilateral
    Hi Linda,
    I had a bilateral mastectomy in June after being diagnosed with cancer in my right breast. I don't regret my decision to have both breasts removed, OR to have immediate reconstruction with tissue expanders. I'm 34, married 10 years, I think that has alot to do with it. The funny thing is, I was planning on getting breast implants next year anyway, i just happened to go about it in the most difficult way possible ;) I'm nearing the end of the expansion process, and i was big busted to begin with so i'm getting big implants, and it's starting to get very painful after my fills. I think I have 1 left, possibly 2 because i normall get 100cc's at a time & asked to get only half of that next time. I'm going to stick with it, and follow through on my wishes to have the boobs i've always wanted when im all done with this cancer crap - i look at it as my "booby prize" - pun intended.
    I'm not 100% sure on getting my nipples done, though. I'm definately getting the tattoos done, but not sure if I want to go through the hassle of having new ones made. I have a while before I could get that done, though, so I'm researching & thinking about it alot. You will make the decision that is best for YOU Linda, and when you come to it, you'll just know. We're here for you!
    *hugs*

    Heather

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