Any long term survivor stories with ILC

2

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  • beach2beach
    beach2beach Member Posts: 996
    edited November 2017

    So glad you ladies responded. It's nice to read life has gone on.

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  • ck55
    ck55 Member Posts: 346
    edited November 2017

    I am happy, no ecstatic, to report that today marks 11 years to the day (and almost the time) that I was diagnosed with Stage IIIA ILC witha huge tumor and 2+ nodes. Still here. Feeling good and looking forward to 12, 13, 14, 15, you get the idea.

    Bless you all.

    Cyndi

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  • EastcoastTS
    EastcoastTS Member Posts: 864
    edited November 2017

    Cyndi!

    Bravo! 11 years. Wow -- that must feel good.

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  • Meow13
    Meow13 Member Posts: 4,859
    edited November 2017

    ck55, great news.

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  • beach2beach
    beach2beach Member Posts: 996
    edited November 2017

    Ck55...Congratulations!

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  • notinuse
    notinuse Member Posts: 33
    edited December 2017

    This is SUCH an encouraging thread, especially to us newbies. Thank you for sharing everyone.

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  • Sciathos
    Sciathos Member Posts: 4
    edited January 2018

    Fantastic news, I too have been curious about the survival rates for this disease.

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  • dreaming
    dreaming Member Posts: 473
    edited January 2018

    I am a long term survivor from ILC and IDC, 24 years, I have had biopsies of my chest wall to remove microcalcifications behind my reconstruction, last year a benign tumor was removed from my real breast.

    I am a very positive person,not once I thought I would die, I get very stressed only the day of the mammoram.

    I am in the medical field and work with cancer patients.

    I have cut any negativity from my life including people.

    I am also realistic that I need good follow up and make sure my doctors do as I say.


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  • beach2beach
    beach2beach Member Posts: 996
    edited January 2018

    Dreaming,

    Glad to hear from you and congrats on 24+ ! Great to hear these stories and I know there are a ton more out there but everyone has gone on to living life hopefully to the fullest and don't come back on often.

    Thanks again for sharing and love your positive attitude..send some my way ;)

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  • lohoff
    lohoff Member Posts: 62
    edited January 2018

    dreaming - LOL to your comment about doctors doing as you say. Love it

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  • DivineMrsM
    DivineMrsM Member Posts: 9,620
    edited January 2018

    For what it's worth, I was diagnosed with ILC stage iv right from the start in early 2011. Easy to do the math to see how long I've been dealing with this. The bc had spread bones in several areas of my body. My oncologist was very open minded and didn't give me any kind of time frame how long I could expect to stick around, only saying. "With treatment, you could live years." I had the presence of mind in that moment to say emphatically "define years!" and she said, "eight...eleven...fifteen... maybe more."

    A commonly referred to statistic for women with stage iv bc is a life expectancy 3-to-5 of years. See my signature for treatments I've had, and since having them I have been stable with the disease. I've had to make adjustments in my life, but it's still pretty good. I chose to move forward living with the disease, not dying from it.


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  • Hipline
    Hipline Member Posts: 195
    edited October 2018

    It's my 8 year Anniversary!

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  • Meow13
    Meow13 Member Posts: 4,859
    edited November 2018

    Another year, no cancer 7 years now.

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  • MoonGirlJess
    MoonGirlJess Member Posts: 267
    edited November 2018

    this thread makes me happy

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  • beach2beach
    beach2beach Member Posts: 996
    edited November 2018

    I passed one year..I consider every day we pass one a victory!


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  • momand2kids
    momand2kids Member Posts: 1,508
    edited November 2018

    Since this thread started I celebrated my 10 year anniversary-- did 5 years of drugs after lumpectomy, chemo and radiation---- feel great- living life-- my kids are 10 years older and close to college-got to see one of them graduate so far--- looking forward to seeing them meet other milestones in their lives and having some fun ones in my own life---- hugs to all!!!

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  • Rhuny
    Rhuny Member Posts: 9
    edited November 2018

    I’m glad you started this thread. I was diagnosed at 39. No family history and no risk factors. Not a lot of ILC anywhere! I became resistant to Tamoxifen and found a tiny lump on my lumpectomy scar. Stupid ILC again! I had a BMX without hesitation. First tumor Oncotype was a 10 and doing the Mammaprint on this tumor. Waiting for results. Glad to hear there’s hope for me to out live this nasty disease.

    I’m premenopausal and they may put me into menopause to take an AI. Anyone go through this

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  • momand2kids
    momand2kids Member Posts: 1,508
    edited November 2018

    Rhuny

    I was pre-menopausal- had to do lupron shots for a couple of years with the AI... I did them monthly at my gyn-- the effects for me were some brain fogginess and vaginal dryness (which could be caused by alot of things)... I stopped the lupron at 3 years when it seemed I might actually be post-menopausal- then finished the 5 years of AI--- that was about 5 years ago-- all things still going well...

    I think there is also a shot you can get every 3 months--- I decided against that because I thought it was alot of lupron at one point....

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  • beach2beach
    beach2beach Member Posts: 996
    edited November 2018

    So glad to read these stories, scary stuff we go through and never quite get rid of the fear..these stories help. @Mom...10 years congrats!!

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  • amee
    amee Member Posts: 1
    edited November 2018

    DivineMrsM: can I ask where you live and who is your Doctor? I am living in Cincinnati, Ohio and looking for an oncologist. Thanks!

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  • DivineMrsM
    DivineMrsM Member Posts: 9,620
    edited November 2018

    amee, I live on the other side of Ohio, about an hour south of Youngstown and an hour west of Pittsburgh, PA. I go to the cancer center at Allegheny Hospital in Pittsburgh. I’m sure Cincinnati has some very good medical hospitals where you can find a reputable oncologist. I wish you the best in your search.
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  • jessie123
    jessie123 Member Posts: 532
    edited November 2018

    A friend of my had Lobular when she was 42 yrs old. She is now 71 and doing fine.

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  • ck55
    ck55 Member Posts: 346
    edited December 2018

    I just passed my 12 year anniversary in early November.

    Cynd

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  • pari143
    pari143 Member Posts: 33
    edited December 2018

    Hi dear

    My mom is 6 years out she doing good . I hope and pray that all the beautiful ladies surviving this beast will see all there wishes come true .

    May Lord bless you all

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  • Rhuny
    Rhuny Member Posts: 9
    edited December 2018

    @momand2kids- thanks for the info. I had my first injection and am having insomnia which is miserable. Hopefully my time enduring this will go smoothly like yours. Glad you are doing well

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  • princessfluffybritches
    princessfluffybritches Member Posts: 81
    edited December 2018

    I feel like this is the most uplifting section! I hope I can rack up the years as well!

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  • dtad
    dtad Member Posts: 2,323
    edited December 2018

    Hi all..a dear friend of mine had ILC 5 cm and 5 lymph nodes positive. She is over 15 years NED. Whats really interesting is she refused chemo because her daughter was having her first baby and she did not want to be sick for it. We know now that chemo isn't always recommended for ILC but they did not know it back then. She did take an aromatase inhibitor for 5 years. Good luck to all.

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  • Janila03
    Janila03 Member Posts: 14
    edited December 2018

    Hi dtad,

    Thanks so much for your post! It gives us newbies renewed hope, especially on our down days. Happy holidays!

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  • geocachelinda
    geocachelinda Member Posts: 223
    edited January 2019

    I was diagnosed in 2011 and I'm still healthy!  Stage 3C with 10 nodes.

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  • CC23
    CC23 Member Posts: 3
    edited January 2019

    I am in my second year and really just trying to keep on keeping on. It is reassuring to see some long term ILC Large tumor, lymph node pos ladies on here.

    I was diagnosed with ILC in April of 2017 5.5 cm and 16/18 nodes. I'm throwing the kitchen sink at this.

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