double mastectomy?

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karenn
karenn Member Posts: 35
edited June 2014 in Triple-Negative Breast Cancer

I have triple negative Stage iiib multiple lymph node and skin involvement.  Not sure yet what my BRCA is.  Would this be indicative for a double mastectomy (a modified radical mastectomy along with a contralateral prophylactic mastectomy) which is what i prefer?   

Thanks,

Kat

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  • moborn63
    moborn63 Member Posts: 70
    edited April 2009

    Due to my family history. I elected to have the double mastectomy.

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  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited April 2009

    How much skin involvement?  Are you just saying at the tumor site had zero margins?  If so go bilt mast or you will be back later.  I know from experience.  If you are truly inflammatory I would get a second opinion on surgery at all right now and later do bilt.mast.  I sure hope they are doing chemo first before surgery for you. Skin mets need knock down before cutting into them. I hope it's tumor margins only for you and they can later be cut out.  Have they talked about what chemo they want to give you?

    Best to you on your decisions.  This really sucks doesn't that you have to make so many decisions without being educated yet?

    Flalady

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  • karenn
    karenn Member Posts: 35
    edited April 2009

    hi.  Thanks for your replies!! 

    I don't know how much margin is involved.  I understood that would be determined during surgery? I had the biopsy and pathology came back with mulitple node involvement.. so much so that they didn't have to do the sentinel node as it was obvious. The tumor was 7.6 cm and it was popping out of the top of my skin, it looked like it was just going to burst right out, and the skin was inflammed and puckered like an orange, and very aggressive -- I discovered the tumor already at that stage.  so they were calling it as IBC but also invasive ductal and triple negative.  I am a bit confused on getting a definite answer on that. when I ask they say that there was skin involvement, etc. I still need to get the pathology report.  I am going through neo-adjuvant chemo 4AC/4TAXOL right now, and it appears to have shrunkun the tumor to aprox. 2.5 cm.  My last chemo will be May 12 and then unto surgery. I had assumed from the beginning that I would get a bilateral.. but then again.. my insurance is not the greatest,, and I will probably have to fight to get it.  I am also a 3-year stage 3a invasive bladder cancer survivor with a radical cystectomy--(bladder removal and neo-bladder reconstruction.)  I am 43 and hoping to go for the long haul.. and that for me means the most aggressive surgery I can get. 

    Thanks again for your reply!!!  Best to you. 

    ~Kat

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  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited April 2009

    Kat,

    So sorry you having to deal with cancer again.  Enough already! You need a break. 

    You disease sounds a lot like me when I started my journey. Don't let them speak negative over your diagnoses.  If your disease does turn out to be like mine and a few other ladies with the same dx...if the bc does return it will stay local.  We (maybe you also) have soft tissue disease and it does act different.  It does not want to travel very far. I was given three to six months to live after my surgery.  I'm almost four years and have tolerated treatment well and have I life in the middle of my cancer journey.  One big piece of advice I want to give you. My biggest problem is lymphedema from surgeries.  Please read everything you can about this and make sure to do everything you can to not bring it on. (some time you don't have too but most of the time we do something to aggravate this).  With IBC your nodes can get full with cancer and not drain you arms or chest wall and this is very painful. Stay on top of this.

    Another thing I would look into if I had to do this for the begining again is look into a trial with hyperthermia and rads to treat the chestwall instead of rads alone.  This is the way science is moving to treat IBC.  Hopefully by the time you are ready for rads there will be more of these trials.

    Best to you and send me a PM if you have any questions.

    Flalady

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