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11 years since original diagnosis

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exbrnxgrl
exbrnxgrl Member Posts: 4,746

It almost escaped my notice but it was almost exactly 11 years ago that I was dx’ed with breast cancer. Although considered stage IIB initially, a bone met was found incidentally a mere six weeks later. The met was radiated and I have had no progression since. Time really does fly. I am incredibly grateful but my most fervent wish is to have some understanding about why I have done so well. No one has any concrete explanation and I find that frustrating but I will take it. Have a wonderful weekend all.



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  • chicagoan
    chicagoan Member Posts: 963
    edited July 2022
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    Congrats on 11 years! There's still so much more to learn about cancer. Did you ever enter the Madison study for long-term survivors? They are trying to figure out why some people live many years with MBC. For ER/PR+, you have to have lived at least 10 years after diagnosis to be considered long-term. I'm hoping I will make it too! Hope you will have an enjoyable weekend as you reflect on this milestone.

  • elderberry
    elderberry Member Posts: 1,058
    edited July 2022
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    exbrmxgrl: YAY YAY YAY. Boy, though. 10 years to be considered long term? When "they" say 3-5 years survival I consider anything over that to be long term.

    chicogoan: you've got 6 so why not another 4?

  • moderators
    moderators Posts: 7,900
    edited July 2022
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    That's awesome, Exbrnxgrl! Celebrating you today! Do something nice for yourself.

    Heart

    --The Mods

  • nopink2019
    nopink2019 Member Posts: 384
    edited July 2022
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    Exbrnxgrl - You posting this sort of news gives the rest of us goals and hope. And you have wonderful insights to share. Congrats!

  • meja
    meja Member Posts: 84
    edited July 2022
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    Fantastic 🎉 Thank you for posting.
    Long term survival brings so much hope. Four years ago, when I was first diagnosed with mbc (also with a single bone met), I quite by chance read one of your posts. I remember how much your story back then helped me - it was a very difficult time for me. I am so happy you are doing well after 11 years.


  • heidihill
    heidihill Member Posts: 1,856
    edited July 2022
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    Congrats, exbrnxgirl!

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,746
    edited July 2022
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    Thank you all for your good wishes 😊! I wish I could provide something more concrete than hope but in lieu of that,hope it is.

    Chicagoan, I was enrolled in some study out of UM Madison but that was many years ago. I will look in to the one you mentioned.

  • edwards750
    edwards750 Member Posts: 1,568
    edited July 2022
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    Congrats exbrnxgrl - coincidentally I will have my 11 year anniversary since my BC DX in August. I was DX with Stage 1b, Grade 1, IDC. I had a lumpectomy and 33 radiation treatments. 8% chance of recurrence with an Oncotype score of 11. Took tamoxifen for 5 years.

    So far, so good. Hope I pass my mammogram test this Thursday. Always a nervous wreck beforehand.

    Diane



  • divinemrsm
    divinemrsm Member Posts: 6,001
    edited July 2022
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    Congratulations, Caryn, on 11 years of stability! I hope you have many, many more years of the same!


    p.s., I made a congratulatory comment earlier today on this thread but somehow it did not post. So trying again.


  • finallyoverit
    finallyoverit Member Posts: 133
    edited July 2022
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    Congratulations! That’s wonderful! I don’t post often, but I’ve always drawn a lot of hope and strength from your posts.


    I am approaching 11 years in October since my original 2A diagnosis and just passed 5 with MBC in May.

    Like you, I’ve had no progression and have no clue why. I am extremely grateful of my relative good health. In fact, 99% of the people in my world (work and personal life) have no clue about either diagnosis. I plan to keep it like that.

    Here’s to many more decades for all of us!

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,746
    edited July 2022
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    Thank you divine and finallyoverit!

    Finally,

    Congrats to you too! 5 years with mbc is no small feat. 100% of the people I know are aware of my mbc. I never hesitate to talk about it and it’s important to me that it not be talked about in hushed voices like some dirty secret. I know not everyone is comfortable with this approach and that’s to be respected. But not to worry, I’ll happily be the big mouth ! Ironically, over the years I’ve had several people suspect me of fabricating my mbc because I have always looked completely normal. This is where I start my three part reveal starting with my port. I’ve never had to go further (though one person just about fainted when I started undoing my bra to show my foobs) but I’m willing to!

  • finallyoverit
    finallyoverit Member Posts: 133
    edited July 2022
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    it’s not a “dirty secret”. I just don’t feel like anyone needs to know. To each their own though. Some women like to dress in pink and shout it from the rooftops. You will never see me doing that, but good for them. As you know, we all deal/handle this in our own way. My way is just living my life like I always have, just now with more doctor appointments and more meds.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,746
    edited July 2022
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    finallyoverit,

    I apologize if I worded that badly. I recognize that everyone makes their own decisions in this area. My observation over these past 11 years is that people sometimes speak of bc in whispers or feel uncomfortable because of the word breast. This is just a casual observation but I notice heart disease or other potentially serious conditions are spoken of more freely. I may completely off base as this is just my observation but never the less, I’m sorry if you took offense.

  • olma61
    olma61 Member Posts: 1,016
    edited July 2022
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    congrats exbrnxgrl and finallyoverit! Wishing you both many more good years <3

    I’m heading into August and my own five year milestone… so grateful to still be on first line of treatment and NED.

  • LI77
    LI77 Member Posts: 68
    edited July 2022
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    Congrats 🎉

    I’m only five months into this dumpster fire of a diagnosis, and I hope that I will be on my first line treatment for a long time.


  • screech
    screech Member Posts: 62
    edited July 2022
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    Wonderful News! You are an inspiration!