Skin sparing mastectomy-delayed reconstruction

SusanAnne
SusanAnne Member Posts: 245
edited March 2014 in Breast Cancer #1
Hi to all. I just wanted to share this bit of information which I recently found out (too late for me). I was diagnosed with a very large tumor (8cm) so my surgeon knew right away that I was stage III. I was scheduled for a mastectomy and when I asked about reconstruction I was told that it would have to wait since they wanted me to start chemo ASAP and they didn't want me recovering from a huge operation beforehand. Therefore, I didn't go to see the plastic surgeon until after treatment ended. Well, it seems like that was a huge mistake on my part. What I've come to learn is that I could have had a skin sparing mastectomy and a temporary expander put in place till after treatment and then had my TRAM flap (or DIEP) reconstruction with a much nicer outcome visually. My plastic surgeon has admitted that his field really needs to do a better job of making the breast surgeons aware of the techniques available. Delayed reconstruction is becoming more common since radiation after mastectomy is making a comeback (plastic surgeons would prefer not to radiate a flap). I made sure to tell my surgeons office about this possibility and that they should refer their patients to a plastic surgeon regardless of their stage. Pass along the word if you will at your surgeons office and support groups! Thanks.
Susan

Comments

  • inkblot
    inkblot Member Posts: 698 Member
    #2
    Hi SusanAnne,

    Thanks for sharing this very important info here!

    I'm very sorry to learn that you didn't go into your surgery having been informed well enough to make your best choices for reconstruction. It reflects yet another hole, which seriously needs plugging, concerning the information we depend upon and too often don't get.

    I know several ladies who did have the skin sparing mastectomy, w/expander and they had very good outcomes. I also know others who weren't made aware of their options and were disappointed to learn of them, after the fact, and I can find no acceptable excuse for any surgeon not informing his/her patient of these options well in advance.

    Aside from the radiation delaying reconstructs,
    there are ladies who just aren't sure they really want reconstruction, so for them, it makes sense to wait, because reconstruction can be done even years following mastectomy. This does NOT, however, negate the surgeon's responsibility to inform EVERY woman of ALL the optional methods at the outset. That is the kind of thing which really makes me see red, (and many others too)
    so thanks again for sharing.

    Love, light and laughter,
    Ink
  • MiaKrause
    MiaKrause Member Posts: 4
    #3
    Susan,
    Hello. I am just now looking into reconstruction- I had a masectomy in December, and I wasn't told about the skin sparing procedure either. Though, I was not really "engaged" in reality at the time of my masectomy- it all seemed to happen so quickly... but I too would have liked to know about the advanced options that were available to me. I wasn't offered an s-flap or gap flap reconstruction at all as an option. In fact, in my area I was told that my 2 choices were the trans flap from my back or implants. Neither were appealing to me- I am struggling with being disfigured in the front- I didn't want my strong, healthy back sliced up too! But, then I found the Center for Reconstruction- down in New Orleans and on my own researched what was available as "rebuild" options. I am glad that I didn't let my dr bully me into his idea of reconstruction during that crazy time. I am going to New Orleans in July to have a breast made from my own tissue and skin- no muscle. Have you gone through reconstruction yet? Mia
  • SusanAnne
    SusanAnne Member Posts: 245
    #4
    MiaKrause said:

    Susan,
    Hello. I am just now looking into reconstruction- I had a masectomy in December, and I wasn't told about the skin sparing procedure either. Though, I was not really "engaged" in reality at the time of my masectomy- it all seemed to happen so quickly... but I too would have liked to know about the advanced options that were available to me. I wasn't offered an s-flap or gap flap reconstruction at all as an option. In fact, in my area I was told that my 2 choices were the trans flap from my back or implants. Neither were appealing to me- I am struggling with being disfigured in the front- I didn't want my strong, healthy back sliced up too! But, then I found the Center for Reconstruction- down in New Orleans and on my own researched what was available as "rebuild" options. I am glad that I didn't let my dr bully me into his idea of reconstruction during that crazy time. I am going to New Orleans in July to have a breast made from my own tissue and skin- no muscle. Have you gone through reconstruction yet? Mia

    Hi Mia. Do you have to go thru chemo or radiation? Will you be having the DIEP flap with Dr. D? I must say that I am very impressed by the fact that he answers questions so thoroughly and quickly on that website. He actually answered some questions for me when my cousin had problems with her DIEP surgery here in NY. Have you met with him?

    Yes, I had a delayed TRAM flap back in May of '04. Just had my nipple and areola tattooed last month. If you don't mind me asking, how does the Center for Reconstruction handle the whole insurance issue? Do they require any money upfront? I'd be very interested in hearing about your experience there. Hope everything else is going well for you. Thanks.

    Susan
  • SusanAnne
    SusanAnne Member Posts: 245
    #5
    inkblot said:

    Hi SusanAnne,

    Thanks for sharing this very important info here!

    I'm very sorry to learn that you didn't go into your surgery having been informed well enough to make your best choices for reconstruction. It reflects yet another hole, which seriously needs plugging, concerning the information we depend upon and too often don't get.

    I know several ladies who did have the skin sparing mastectomy, w/expander and they had very good outcomes. I also know others who weren't made aware of their options and were disappointed to learn of them, after the fact, and I can find no acceptable excuse for any surgeon not informing his/her patient of these options well in advance.

    Aside from the radiation delaying reconstructs,
    there are ladies who just aren't sure they really want reconstruction, so for them, it makes sense to wait, because reconstruction can be done even years following mastectomy. This does NOT, however, negate the surgeon's responsibility to inform EVERY woman of ALL the optional methods at the outset. That is the kind of thing which really makes me see red, (and many others too)
    so thanks again for sharing.

    Love, light and laughter,
    Ink

    Hi Ink,

    I must say, the more women I hear about that had this procedure, the more angry I get that it wasn't offered to me and that I didn't take it upon myself to speak to a plastic surgeon. What was I thinking??? I am usually one to look under every rock before making a move. Anyway I can't get caught up in that now because it does me no good. However, I can make sure that others are informed, hence my post. I am also trying to set up my plastic surgeon to come speak at my support group meeting (which takes place in my breast surgeon's office by the way). Thanks for your support.

    Susan
  • littlelindalu
    littlelindalu Member Posts: 25
    #6
    Dear SusanAnne -

    There is a group that maintains a website called DiepSisters -- there they list drs that have been recommended to them by women who have had good results. Their list includes drs from many states and ones who perform all tissue transfer surgeries: tissue transferred from ab, butt, arm/upper back and even thigh areas.

    They also are wonderful at linking women seeking these procedures with women who have had good results to answer questions.

    I am glad that you brought up this discussion and hope that more and more women are made aware of all reconstruction options available.

    Regards,
    Linda
  • auzigal
    auzigal Member Posts: 20
    #7
    Although I strongly believe that we should all be informed of our options before we undergo any of the treatment, including surgery, there are some very positive reasons for not having immediate reconstruction when they know you will be having radiation. i had the immediate tissue expander, and then later, they tried to put in implants, then they tried it again, then they tried a TRAM, I not have silicone implants. it was a nightmare. Because I had the expander in when they did radiation, there was so much scar tissue around it that neither the implants or the TRAM were successful. I was blinded by the fact that i didnt think I would have to have radiation and so it wouldnt be a roblem for me, and I so much didnt want to wake up from the mastectomy with nothing there. It had led to the last three years and multiple surgeries to fix what happened. i agree we should all know about our options, but be aware of the downsides of something that may seem better fr you than it actually is.

    Good Luck and Hang in there!

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