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Long term survivor examples.

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  • SlowDeepBreaths
    SlowDeepBreaths Member Posts: 6,702
    edited September 2015
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    Great news Sjreed!!

    char, Wow....twice! Thanks for sharing! Great to hear you're doing well.

    shori, I blame everything on chemo brain!!

    yellow, congrats on 7 years!! Great advice!!

    Thanks ladies!!

  • Gorilla12
    Gorilla12 Member Posts: 12
    edited October 2015
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    It feels good to post under long term survivor. Not what I thought I would be a veteran at, but okay. It is going on 11 years out for me. I have remarried, my daughter got her master's - a new job and my son is in the Marines in Japan. Life does move on after this horrible disease.

    I have my yearly mammogram next week, God please let that be NED again. I hope my story can help someone else have hope. I know that is what I wanted so desperately when I was sick.

    Love - Gorilla12


  • SlowDeepBreaths
    SlowDeepBreaths Member Posts: 6,702
    edited October 2015
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    Gorilla, WOW....eleven years is wonderful to hear!!
    Sending best wishes for your mammo next week!! Please let us know how it goes if you can!!

  • Tninj
    Tninj Member Posts: 3
    edited October 2015
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    Hi. Is anyone currently participating in a clinical study for triple negative IDC at Dana Farber? My onc suggested I might be a "good candidate", but I've already pushed for chemo (began last Tuesday), and I am curious about trials as well. It's hard to be your own best advocate! I know I just wanted to be treated- ASAP.

    Warmly,

    T

  • Gorilla12
    Gorilla12 Member Posts: 12
    edited October 2015
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    Hello Everyone,

    I don't post here often, however today I have to. I just came back from getting my yearly mammogram. We have moved recently and I went to a new breast center. They took such great care with me. They had all my prior records and film. I received a normal reading after a diagnostic mammogram. I am so relieved and excited!!

    I was diagnosed 11 years ago with triple-negative and I was defined as "cured" by my oncologist after 10 years disease free. I want to give hope to others that there are long term survivors of this disease.

    I am so happy to be here with my husband, daughter, son and two pups. Live is wonderful and the possibilities are endless to dream and fulfill life.

    Love you all,

    Gorilla12

  • SlowDeepBreaths
    SlowDeepBreaths Member Posts: 6,702
    edited October 2015
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    Great news Gorilla!! You give us all hope. Thanks for sharing your news!!!

  • dprice74
    dprice74 Member Posts: 1
    edited November 2015
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    I just happened across this board, and thought I would pop in with some words of encouragement. I remember the shock of my cancer diagnosis, the dark days of treatment that seemed to go on forever, and how scared and depressed I was. I was diagnosed with aggressive stage 2B ER-/PR- breast cancer in February 2000. It wasn't until later that the HER2 test became available, and it was determined I was also negative for that. So yes, triple-negative. I opted for a lumpectomy followed by seven long months of treatment, including A/C, radiation therapy, and Taxol. It felt like treatments would never end, that cancer would rule my days forever. Unbelievably, the treatments did eventually end, my hair grew back, I could eat without throwing up, and my life returned to normal. And eventually the day came when I went a whole day without thinking about cancer. I remember hitting that magic 5-year mark and feeling like my life had been given back to me! It's been nearly 16 years since my diagnosis, and I'm still cancer-free, and I rarely even think about it. I really did kick cancer's butt! So for those of you who are newly diagnosed, or in the middle of treatments that seem like they will never end, for those of you who are scared, depressed, feeling helpless to order your own destiny, I just want to say hang in there and stay strong. There is life after cancer, and it is good. I pray that each and every person reading this forum lives a long, healthy, beautiful life with cancer far behind you and only loveliness ahead.

  • BanR
    BanR Member Posts: 238
    edited November 2015
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    Whenever I feel low...I make sure to come read this thread.

    TNBC can be conquered....yes it can!!

    dprice...you are right, there is life after cancer and i wish everyone here a long one!!!

    T, do let us know more about the clinical trials and the studies...

    hugs to all!!

    cheers to good health!!


  • Luvmydobies
    Luvmydobies Member Posts: 476
    edited November 2015
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    Gorilla and dprice thanks for posting here! Congrats!!

    I also know a TN survivor who is 17 years NED and another who is about 20 years NED!

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,932
    edited November 2015
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    Hello everyone,

    I have just been reading through some of the posts on this thread created by BanR. I am from the UK and was diagnosed with IDC triple negative back in 2005. It was not called as such at the time. I was told the prognosis was not good, but I had my treatment. At the end of this I was NED. I was with the hospital for ten years for check ups and then was able to be discharged this year. I am thus alive and well ten years on.

    I hope my post will encourage and motivate you all.

    Greetings from the UK.

    Sylvia

  • BanR
    BanR Member Posts: 238
    edited November 2015
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    Thanks so much Sylvia!

    Getting diagnosed with a 6cm lump would have been scary but then it looks like, that little monster, wasn't behaving as aggressively ..since it affected just one of your lymph nodes inspite of its size. A co patient here got a 2.5 cm lump but 3 lymph nodes affected!!

    I am so happy that you have come out of it so well and thank you for joining here and encouraging us.

    We will look forward to hear more from you..


    I hope everybody else is doing well.

    Advance wishes for the festive season ahead!!!


  • BanR
    BanR Member Posts: 238
    edited November 2015
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    Luvmy...

    So very glad to hear about your freinds.....one 17 year survivor and another 20 year!! Both TNBCs? How did they find out that it was TNBC those days and what was the treatment protocol....if you know, then please share with us too..

    love!!

  • meadow
    meadow Member Posts: 998
    edited November 2015
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    love love hearing from you all, thank you!

  • Mamiya
    Mamiya Member Posts: 151
    edited November 2015
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    I have a personal friend who is about 11 years out with TNBC. She had another BC episode at about 5 years on the other side (was very early, did not need chemo again, did another mastectomy on that side), but now she is 6 years out from that one and doing really well. There's hope!

  • BanR
    BanR Member Posts: 238
    edited November 2015
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    thats wonderful to hear notdoneyet.. Good that they caught her second BC early. sending warm wishes to her!!

    happy thanksgiving everyone..

    wishing good health and happiness...

  • Katzie
    Katzie Member Posts: 2
    edited December 2015
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    To all of you on this forum. Reading the responses of longterm survivors of TNBC gives more hope to all of us. Reading stuff on the internet scares the life out of you , makes you feel there is no hope , no life after diagnosis. All you survivors prove that there is hope. Thank you all


    Dx 7/3/2014, ICD 5cm, Grade 3, 0/24 nodes, ER-/PR-, HER2-

    Chemotherapy April 2014-july 2014

    Surgery 11/08/2014 Right mastectomy, left risk reducing mastectomy, node clearance right , left sentinal node

    Radiation 4/10/2014 x15

  • KSteve
    KSteve Member Posts: 190
    edited December 2015
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    I posted in the Calling TNs thread in September, but realized I didn't post here.  I hit my 5-year mark in September.  As you will see below I had a large tumor and some lymph node involvement.  I was grateful to have a complete response to the chemo, followed by BMX and radiation.  While the reconstruction part was kind of a long road for me (due to radiated skin breaking down a couple years later), I can honestly say breast cancer doesn't rule my life anymore.  We travel as much as possible (while holding down our full time jobs).  I'm loving life and making lots of new memories with family and friends.  That's one of the biggest personal lessons I learned during this journey.  I'd much rather make memories with my loved ones, then give them "stuff".  We still exchange presents with each other, but most of the presents are for an activity.  Luckily, my family and friends love this.  We just came back from a long weekend in Napa to celebrate my daughter's 25th birthday, and it grew into a group of 17 people!  It was a great time and something that none of us will forget.  So, for those of you in the middle of treatment, there will come a time when breast cancer isn't the only thing you think about.  I still remember it, but it doesn't creep into my thoughts as often as it used to.

    Happy holidays and hugs to all!

    Kathy

  • sbeddows123
    sbeddows123 Member Posts: 3
    edited December 2015
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    Thanks all....it really does help reading these posts when the anxiety creeps in :

  • BanR
    BanR Member Posts: 238
    edited December 2015
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    I was reading a beautiful little story, in another thread, ..written by a lady called debwarrier. She was diagnosed with TNBC in 1997, when she was pregnant . 19 long years passed by and now her daughter is about to go to college!! Her story just made my day... I wish ..I so much wish even I can see my daughter grow up into a beautiful woman some day!!

  • pamcycle
    pamcycle Member Posts: 11
    edited December 2015
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    Just had my 5 year check up. I was also diagnosed with DCIS TNBC, had a bilateral mastectomy. The path report showed another cancer in the same breast a 1.8 cm tumor micropapillary triple negative tumor. My oncologist said at my last visit that the chance of a recurrence is very low, I'm as likely to get cancer as anyone else in the population. Wonderful Christmas present and I thank all my doctors for doing an outstanding job. CHEERS!!!

  • Tninj
    Tninj Member Posts: 3
    edited December 2015
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    I needed to read this tonight. Thank you.

  • TectonicShift
    TectonicShift Member Posts: 102
    edited July 2020
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    .

  • Ruru99
    Ruru99 Member Posts: 4
    edited January 2016
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    You can read my diagnosis in my 'signature line'. I just found out today (I might have been told earlier and forgot) that I was triple-negative in 1999. They didn't test for Her2 back then but they re-tested the pathology in 2004 for some reason and I was negative. I had a mastectomy, 6 cycles of FEC and 35 radiation treatments. Took up running 6 years after treatment and I think that was my 'prevention medicine' since tamoxifen wasn't going to be effective.

    Unfortunately, right now I'm being worked up for what doesn't present like a recurrence but a new cancer but I have no definitive results yet.

    Good luck to everyone!

  • BanR
    BanR Member Posts: 238
    edited January 2016
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    Thanks for the info Tectonic..

    Ruru.. thanks for stopping by and sharing your diagnosis with us. Sorry to hear that you are having to go through the stress of recurrence... i am sure you would have seen may ups and downs the last 17 years. This too shall pass...pls keep us posted about the results


    wishing good health and lots of happiness to everyone...

  • Meggy
    Meggy Member Posts: 74
    edited February 2016
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    8 years out.  Hugs to you all.

  • honeytagh
    honeytagh Member Posts: 447
    edited February 2016
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    Congrats Meggy. Thanks for sharing Heart

  • TulipsAndDaffodils
    TulipsAndDaffodils Member Posts: 48
    edited February 2016
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    Hi everyone,

    Thanks for sharing your stories! They really help!

    Meggy, if you don't mind me asking, why did you have more chemo after surgery? I had neoadjuvant chemo, and then my surgery in November. I did not get a pCR (I had .8cm tumor left after the chemo). So often, it seems that the survivors all had pCRs. I'm wondering if you had more chemo after surgery because you had residual cancer, too? If that's the case, it makes it extra great for me to read your story! Also, did you have to be part of a clinical trial to get the extra chemo, or did your oncologist just decide to prescribe extra chemo? Because right now, it seems, that the protocol is really just watchful waiting if there isn't a good clinical trial (right now, there aren't any appealing trials that I qualify for). So my oncologist is not really recommending additional treatment. I am seeing him again in 2 weeks and plan to push for more chemo (specifically, capecitabine). Just wondering if you had to really advocate for more, or how it all came about in your case. No worries if you don't feel like going into all of this--thanks for your story and I'm so glad you are well!

    Tulips

  • lululani
    lululani Member Posts: 5
    edited February 2016
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    Hi out there! I am 5 yrs & 8 mo. out from a diagnosis of TNBC stage 3a with 8 positive nodes, one of which was the size of a circus peanut. I never imagined that I would have gotten this far out when my journey started, so here is HOPE to all of you with a special shout out to node-positive gals. My treatment was standard--4 dose dense AC & 12 Taxol--& 33 rads. When my treatment was over, I took a trip to Italy & found so much peace & healing in doing so. I have returned to full-time teaching, and I have been working on fixing up a 1935 cottage for the past 4 years. During treatment, I walked, prayed, attended church, took modified fruit pectin, bicycled, listened to visualization tapes, drank green smoothies, and had many conversations with God. Thank you for reading and wishing you light, love, and laughter

  • Ag23
    Ag23 Member Posts: 28
    edited February 2016
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    Hello all,

    I would love to hear a long term survivor story from someone that had significant tumor size left after chemo. My fear is that all of those who have survived disease free are women who had a pcr or near pcr. After act, the tumor taken out at bmx was 3.2. They gave it a score of 2 (in terms of response to chemo, with 5 being the best).

    If you or anyone you know is a long term survivor with a high residual cancer burden, I would love to hear from you! I plant to collect these stories to read on days when I need encouragement.





  • BanR
    BanR Member Posts: 238
    edited February 2016
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    We have a few women posting on and off, who couldnt take chemo or who had residual tumor left, or whose tumor was resistant to chemo......I have been hearing from them at regular intervals, posting in threads ... since 2013. I cant recollect their names right now...but yes, there are.