DCIS--- Double Mastectomy

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Doris96
Doris96 Member Posts: 1
edited June 2014 in DCIS (Ductal Carcinoma In Situ)

I had a double Mastectomy done on Dec 10/09 with reconstruction.  I just met with my oncologist and was informed that my margins were not clear and that I would need more surgery about 15 minutes.  Just to remove a little bit.  Has anyone experienced this?  I was really surprised and angry, thinking that after the Mastectomy all was done.  I was told this was the first time it happened to my oncologist.

Has anyone also experienced shortness of breath a month after their surgery.

Thanks for all your help.

Doris 

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  • CrunchyPoodleMama
    CrunchyPoodleMama Member Posts: 1,220
    edited January 2010

    Oh goodness - I can't answer your question but I don't blame you for being surprised and upset. How can they not get clear margins with a bmx?!! and another "15-minute" surgery?? I don't understand that?? Did you ask him how this is possible? Anyway, I wish I could give you answers, but hopefully a 15-minute surgery is really all that will make this go away forever. Hugs to you!

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  • JAT
    JAT Member Posts: 81
    edited January 2010

    Doris:

      This happened to me, as well, Several women have posed about this issue-- it's actually not that uncommon.  I was very small breasted and slim, and the surgeon said she had taken everything she possibly could, but one of my superficial margins was less than 1 mm.  She met with the tumor board at Georgetown and  then I also consulted with an oncologist at Hopkins who presented my case to his tumor board-- the issue was, do radiation as "insurance" or do what your dr. is suggesting, re-excise some extra skin/tissue.  Since I was having my implants put in 4 months later (I had tissue expanders put in  at the time of the double mastectomy), she said she'd take the extra tissue then. For 4 months I agonized over that damn 1 mm margin.Everyone else (the plastic surgeon, oncologist) reassured me that it was probably a negative margin.  The surgeon did remove a pretty significant area around the scar line, so that my right scar is much longer than the left (prophylactic side)-- and the biopsy came back negative.

    My advice to you is to ask about the size of the "dirty" margin and if she still can't get a clean margin, if radiation is necessary. I'd also ask her to present the case to the tumor board-- so you have the input of the pathologist, radiation oncologist, and other surgeons.

    -- Good luck. Everyone told me, "don't worry"-- but I know that's pretty useless advice.--Julie 

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  • Beesie
    Beesie Member Posts: 12,240
    edited January 2010

    As JAT mentioned, this is not actually that uncommon.  This is why one can never assume going into a mastectomy that it's a certainty that radiation won't be required.  Even with a mastectomy, one can end up with tiny or non-existant margins, and then either a re-excision (if physically possible) or radiation will be required.

    In my case, I had a 1mm anterior margin - by the skin at the scar line. My understanding is that this is actually the most common spot for a recurrence for those who have a mastectomy.  My solution was to have my PS trim a bit of skin from the scar line when I had my surgery to replace my expander with the implant. 

    JAT's suggestions in terms of next steps and what to ask your surgeon are good. 

    Good luck to you - hopefully re-excision surgery does the trick and radiation won't be necessary.

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