Stage IV triple negative 5 year survivors

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Kerrilyn
Kerrilyn Member Posts: 41
edited September 2018 in Triple-Negative Breast Cancer

Hello Ladies,

I spend alot of time lurking around on these board and I love reading all the encouragement and support everyone gives. Something on the boards makes me cry everyday for someone or just being scared for myself.I get so excited when I read posts about being NED or just having good scans.

I am 39 original diagnosis IIb in 2003, mets to lungs and supraclavicular lymph node 8/2009,TRIPLE NEGATIVE both biopsy's. So my question is..... are there any stage IV triple negative 5year survivors out there? I never see any!  I am BRCA1 positive also. I lost my mom to this when i was 25 her battle was not very long about 1 year after being stage 4. I am 6 months into this and can't imagine not being here in a year. Especially for my 2 boys.

Just looking for a little encouragement my way.......Its my turn to whine........

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  • HairSprayMom
    HairSprayMom Member Posts: 251
    edited January 2010

    I'm not a Stage IV Trip Neg, but I am a stage 3 er. I am 39 with 3 kids and its is so scary!Just wanted to send you some BIG LOVE and ((HUGS)) And your not whining, just venting and thats OK!

     Sending Calming Vibes~~~~

    Regina

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  • tibet
    tibet Member Posts: 545
    edited January 2010

    Kerri

    What was your treatment the first time in 2003? Usually for TN, the recurrence rate after 6 yrs is so small from what we read. What did your doctor say?

    Did you have prophlactic mast and mast the first time?

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2011

    delete

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  • Kerrilyn
    Kerrilyn Member Posts: 41
    edited January 2010

    yes i had a bilateral mastectomy (hoping that i wouldnt be where I am today) dose dence ac-t. Saw my onc every 6 months. Had been to her in june....tumor markers normal. I felt the node in the end of july. Tumor markers still normal to this day. All my doc could say was this really sucks!!!!!!!

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  • Parrynd1
    Parrynd1 Member Posts: 408
    edited July 2018

    Hello,

    I want to bump this since I’ve had a hard time finding stage IV TNBC NED stories. Could always use some positive stories. I hope to post one here someday, but I’d love to hear from the community in the mean time :)

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  • AllyBee
    AllyBee Member Posts: 128
    edited July 2018

    Hi Parrynd1

    I'm not NED and I'm only a couple of months into treatment for mets. I'm sorry there haven't been any reply to this thread just yet but I like to hope that these ladies are off enjoying there lives and are not active on the threads.

    I just wanted to post this link to another thread in case you hadn't come across it (I hope that's allowed). One lady 10years out and another 6.

    https://community.breastcancer.org/forum/8/topics/...

    Let's hope we can add our stories on here one day :)

    Ally


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  • Parrynd1
    Parrynd1 Member Posts: 408
    edited July 2018

    AllyBee,

    Thank you for the thread link! I do hope those who are NED are off living their life and out of the cancer 24/7 mindset...I didn’t think of that, but I hope it’s true :

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  • rdeesides
    rdeesides Member Posts: 459
    edited July 2018

    I was reading old posts from the Stage IV Triple Negative thread and some of the people who were on that thread early on in 2011 or 2012 or something like seem to still be around, according to their profiles. I don't see them post, but their profiles indicate they have logged on in at least the last year. That is something. And from what I read, it seems like a few of them got to NED status.

    Rebekah

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  • wyngaardt
    wyngaardt Member Posts: 8
    edited September 2018

    We should share this info

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