new diagnosis of metastatic triple neg breast cancer

galeb
galeb Member Posts: 9
edited June 2014 in Just Diagnosed With a Recurrence or Metastasis

6 years out from initial diagnosis of stage 1 IDC, triple negative. Now has mets to lymph nodes, viseral tissues, and muscle diagnosed on 6/3/13. Have not been told a stage, just mets. currently doing radiation on 18/33, chemo carboplatin currently. Does anyone have any words of wisdom on prognosis. Feel like this subject is GREATLY avoided,  small amounts of info given, expressions like, we are not treating you pallatively yet, then last week was told our "goal" is to keep the cancer cells at bay as long as possible. I want to be positive, but am also realistic. At what point do they tell you not favorable, or have they already and I am not hearing it? Was told if we beat this I have a 80% chance of it returning only even more aggresively. 

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2013

    Saw your post on Active List.   So sorry you are facing this again. I have no words of wisdom, just know friends with 3N swear by all they learn at Triple Negative Foundation http://www.tnbcfoundation.org/

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited June 2013

    Hi galeb,

    Sorry that you've received this news. We've had some discussions on whether one says they are their original stage with mets or when one is diagnosed with mets, they say they are stage IV. Most of us just say we are stage IV, regardless of where we started. The reality is, if you have mets, you will probably pass away from bc eventually. The hopeful part is that many of us are living meaningful lives, albeit, with some adjustments for tx. We go through hard times as well, but there is a lot of reason to hope. Check out the stage IV forum. Many, many threads dealing with all types and aspects of mets as well as lots of support, warmth and sisterhood.

    Caryn

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  • galeb
    galeb Member Posts: 9
    edited June 2013

    Thanks for the reply Karen, I think that is what I already knew but didn't want to hear. Will look at the other site. Better start my bucket list.

    Gale

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited July 2013

    Galeb,

    Here's the part of my post that I really want you to hear; There is much reason to hope. There are many treatments to try and more are coming down the pike. I am about 2 years post dx. I work full time at a job I love, have become a grandmother and just danced at my younger daughter's wedding. I'm planning a vacation to New Zealand and Australia and intend to keep living until I can't. I can almost promise you, that once the initial shock has worn off, you will find a way to live as best as you can.

    Caryn

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  • galeb
    galeb Member Posts: 9
    edited July 2013

    Thanks  Karyn, I hear you loud and clear! Full of life and hope, just coming to the realization that every morning when I open my eyes I will make it count. Hope you have fun on your "little" vacation. Thank you for your honesty, and taking a moment for giving me a few words of encouragement!

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