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ILC Long Term Survivors

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  • mikamika
    mikamika Member Posts: 242
    edited February 2020
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    sweetgirl19,

    Thanks for your post! Do you now the details about their treatment and stages?

  • Sandiegohoneybee
    Sandiegohoneybee Member Posts: 6
    edited February 2020
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    hi. Did u do nerlynx? I’m Er and her2 positive. At crossroads.

  • karen1956
    karen1956 Member Posts: 4,505
    edited February 2020
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    Today I mark 14 years since I heard those dreaded words!!! For fun I did the math (14 x 365) and that equals 5110 days!!!

  • mikamika
    mikamika Member Posts: 242
    edited February 2020
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    karen1956,

    Congrats! I wish you to post here about your 44 year mark since that date. And for all of us I wish to read this post!

  • karen1956
    karen1956 Member Posts: 4,505
    edited February 2020
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    Mika - 44 years from Dx will have me past 100!!!! But thanks!!

  • lauri
    lauri Member Posts: 59
    edited February 2020
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    Fourteen years since I found the "thickening" in what used to be my left breast. At 75, many other things are falling apart but BC isn't one of my problems.

  • Moag
    Moag Member Posts: 2
    edited February 2020
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    Thank you so much lauri! Wish you continued good health Heart

  • cathmg45
    cathmg45 Member Posts: 5
    edited February 2020
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    Hi everyone,

    I will mark 12 years since diagnosis when this summer rolls around. Wow. I couldn't have imagined being at this point back then, since I was devastated by the diagnosis and year or so of treatments. I didn't even want to hear from my onc back then about my prognosis for survival. But here we are. The years since 2008 have had SO many peak moments. I miss my onc appointment last year, then decided that I should see him. I had to ask my husband what the doctor's name was-I had actually forgotten, and it wasn't just chemo brain!! I did see him and we had a nice chat. I hope we all live long and well.

    Catherine

  • mikamika
    mikamika Member Posts: 242
    edited February 2020
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    cathmg45,

    Congrats and thank you so much for posting here!

    What was your treatment? Could you please share?

  • cathmg45
    cathmg45 Member Posts: 5
    edited March 2020
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    Thanks MikaMika! I had a bmx, followed by 4 rounds of chemo: taxotere and cytoxan. Then I had 2.5 years of Tamoxifen before I threw in the towel because of side effects. I had reconstruction with implants a year after bmx. So far so good.

  • mikamika
    mikamika Member Posts: 242
    edited March 2020
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    cathmg45,

    Thank you for your response!

  • wallycat
    wallycat Member Posts: 1,252
    edited April 2020
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    I just completed 13 years, starting on 14....I posted in the ILC section since that is what I had (as a cancerversary post).

    I know how you ladies feel...never thought I'd be out this far. Sure, it can change in a heartbeat, but that's life, right?

  • beach2beach
    beach2beach Member Posts: 245
    edited April 2020
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    Congrats and a long, long time of cancerfree living!

  • iamelaine
    iamelaine Member Posts: 39
    edited April 2020
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    I hit 16 years early last month. I had terrible stats when diagnosed but I'm still here and cancer free.

    Happy Easter, ladies!

  • HelloItsMe789
    HelloItsMe789 Member Posts: 2
    edited April 2020
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    Congrats wallycat and IAmElaine!

    Heart

  • kar123
    kar123 Member Posts: 72
    edited April 2020
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    Such great news!!! Thank you so much for coming back and inspiring hope! 10 years for me in June!

  • skv0123
    skv0123 Member Posts: 8
    edited May 2020
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    thank you all so much for adding to this thread. I am 1 year from diagnosis, 10 mths our from a Bilateral Mastectomy. On tamoxifen & Lupron. Was ER/PR +, HER -, 2.5cm, 0 nodes. I only get on the board every few month now, but it has always been helpful to me.

  • antonia1
    antonia1 Member Posts: 73
    edited August 2020
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    It has been 10 years since I saw in the bathroom mirror my poor flattened and misshapen left breast and next month will mark the 10thanniversary of the official diagnosis. I’m fine, as far as I know, but still keeping my fingers crossed.

  • Longtails
    Longtails Member Posts: 2
    edited August 2020
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    Congratulations antonia1, kar123, IAmElaine and others!! Very inspiring and thank you so much for sharing! Very happy for all of you.

  • bc101
    bc101 Member Posts: 923
    edited September 2020
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    Hello!

    I'm 7 years out and am feeling great. In the early years, I used to spend a lot of time on this site and most of it was wasted by worrying about one thing or another, but now I rarely venture here. Nowadays I worry more about Covid than cancer. What a year, huh? It's so inspiring to hear from the long term ILC survivors! I'm enjoying my life as much as I can and hoping for many more cancer-free years to come!


  • lillyishere
    lillyishere Member Posts: 770
    edited September 2020
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    BC101, what stage were you? Did you have ILC in your nodes?

    Wishing you many other ILC free years to come.

  • OGT42
    OGT42 Member Posts: 1
    edited September 2020
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    I was diagnosed with ILC Stage 3A in May 2007. I was convinced that I was unlikely to survive and yet here I am, 13 years later, and healthy so far

  • mikamika
    mikamika Member Posts: 242
    edited September 2020
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    Thank you so much ladies for sharing your stories here! 💚
    I wish you (and all of us) many decades of happiness and good health!
  • BeingPresent100
    BeingPresent100 Member Posts: 8
    edited October 2020
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    Curious if there are any long term ILC survivors who had lymph node involvement and were diagnosed in their 40s? Anyone on here past 15 or 20 years? Thanks!

  • BeingPresent100
    BeingPresent100 Member Posts: 8
    edited October 2020
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    Thank you for this post! I screen shot all of these survivor stories....inspiring.

  • bc101
    bc101 Member Posts: 923
    edited October 2020
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    LillyIsHere - sorry I missed your post!

    I was stage 2b with micromets in my sentinel node. I didn't have to do chemo (low Oncotype). It was really hard for me to decide whether or not I should do radiation, but since they gave me the option I decided to opt out. My only regret was getting breast implants. Five years later I was recommended to stop AI's due to my risk of osteoporosis.

    It does get easier the further you go out, but of course the fear never goes away.

    Best wishes to everyone here!

  • momand2kids
    momand2kids Member Posts: 118
    edited November 2020
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    Meant to check in-- 10/29 12 years out--- completely forgot on that day---- good luck to everyone!!!

  • mandalynn
    mandalynn Member Posts: 22
    edited January 2021
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    Hello all!

    I passed my 12 years out mark last September. Feels so good to know I have survived so much. Unfortunately I am now living with a new diagnosis of Stage III Lymphedema in my right arm. I am planning on having surgery to help with that and it is definelty a bummer as it is something I will have to deal with in some form for the rest of my life. However, it is much easier knowing I'm cancer cured!


  • KathyNSW
    KathyNSW Member Posts: 16
    edited January 2021
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    Hello All,

    I thought I would check in as this year in august I will be 13 years since diagnosis.

    I am going good but have osteoporosis in left pelvis.

    Am very grateful and blessed for everyday as we never know what's around the corner.

    Take care

    Kathy xx

  • Astrid
    Astrid Member Posts: 1,033
    edited January 2021
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    Hi Kathy and all who posted here.

    Being present, I son't exacrly fit your question as I was in my 40's and had 1 node pos, with extra capsular spill in 2002.. but that was IDC.

    In 2012 I was dx with ILC but by then I was 52yo. That makes me a 9 year survivor of ILC though which is awesome right?

    Stay well everyone.

    HeartAstrid.

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