Long term survivor examples.

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  • wrenn
    wrenn Member Posts: 2,707
    edited November 2019

    I am 6 years NED and only had one dose of chemo (stopped due to complications). I rarely even got a cold before cancer but since have had numerous infections. I keep seeming to get infections on my face (nose and eyes) even though I am very careful with hand washing. I have had a sore throat that scared me it was so bad, pneumonia, subluxation of shoulder, osteoarthritis in all joints and dizziness and balance issues, neuropathy to the point that I can't stand more than a few minutes (using a walker) and I keep dropping things.

    I am 72 so it could be age related but 72 isn't that old and all of my siblings are the picture of health and seem younger than their chronological ages.

    I sometimes wonder if it is stress related since my nerves are way worse since being diagnosed even though I don't consciously worry about recurrence.

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  • Valstim52
    Valstim52 Member Posts: 1,324
    edited December 2019

    Hello

    Not sure if 5 years is long term but I feel like it is. Im not only triple negative, but inflammatory as well.

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  • msjag
    msjag Member Posts: 416
    edited January 2020

    Happy New Year to all! I wanted to pop back to to give what I was given when I first came here for support: hope and inspiration! I am on my 10th year of being NED and doing well! I also wanted to share that a friend is 22 years NED! Sending hugs and positive thoughts to all.

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  • santabarbarian
    santabarbarian Member Posts: 3,085
    edited January 2020

    msjag, that is wonderful to hear!! Congratulations to you!


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  • VLH
    VLH Member Posts: 1,258
    edited January 2020

    Excellent news, msjag, from both you and your friend!

    Lyn

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  • simplelife4real
    simplelife4real Member Posts: 563
    edited February 2020

    Just popping in to say I'm now a 7 year survivor. I had stage 2b TNBC and had neoadjuvant chemo, lumpectomy, ALND and rads. I had a small amount of cancer remaining in 2 nodes when I had my ALND so it wasn't the best result from chemo, but I'm still here and still NED! Good luck to everyone going through treatment.

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  • santabarbarian
    santabarbarian Member Posts: 3,085
    edited February 2020

    wonderful to hear that simplelife! Thanks for popping in!!

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  • VL22
    VL22 Member Posts: 851
    edited February 2020

    Thank you simplelife4real! Your story is both comforting and inspiring.


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  • Maryjv
    Maryjv Member Posts: 306
    edited February 2020

    yes thank you for the inspiration!!!

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  • Mistiferlyn
    Mistiferlyn Member Posts: 8
    edited March 2020

    I was diagnosed with IDC TNBC stage 2b in August 2019. I had 4 rounds of AC and 12 weekly Taxol treatments which my last was Feb.6, 2020. I have 2 spots which are connected in upper outer quadrant of left breast and into armpit. After the chemo it has shrunk a lot. I had a PET scan in Sept. which only showed the one spot. I am scheduled for a double mastectomy with reconstruction and will also be having my ovaries and fallopian tubes removed at the same time. Surgery is March 24. I had genetic testing done and am positive for BRIP1 which is a newer gene but prone to ovarian cancer. My question is my breast surgeon is saying I do not need radiation, however, I am very scared about this due to the reoccurrence rate. I am wondering if there are any survivors who did not have radiation. I am just trying to research this before my surgery. Thank you in advance for your reply. Bless all of you. You all rock and are such a great inspirtation.

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  • Moderators
    Moderators Member Posts: 25,912
    edited March 2020

    Welcome, Mistiferlyn! We're so sorry you find yourself here, but we hope you find this community to be a source of support and inspiration. You are certainly not along, and we're all here for you. Best of luck with your upcoming surgery, we'll be thinking of you!

    The Mods

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  • santabarbarian
    santabarbarian Member Posts: 3,085
    edited March 2020

    If you did not get a pCR from chemo, I believe the 'extra' TNBC treatment you might be able to get now would be Xeloda. You might ask about that. The stats say that Mx is equal to Lx + Rads. Another thing you could look into is the kind of rads where they place radioactive beads in the tumor bed during surgery. There may be trials that give these treatments too.

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  • BanR
    BanR Member Posts: 289
    edited March 2020

    Wonderful stories! Thanks for sharing .. Bring on more! Much love!

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  • Desirr77
    Desirr77 Member Posts: 31
    edited March 2020

    I am a 4 year survivor of TNBC and a palb2 mutation carrier

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  • Scoobydoo
    Scoobydoo Member Posts: 499
    edited March 2020

    Diagnosed in June 2009 with Stage II triple negative. That’s almost 11 years!!!!! I am thankful to the Lord for He is good.

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  • NinjaMeow
    NinjaMeow Member Posts: 41
    edited September 2020

    Diagnosed at 40 after the birth of second child. I was completely devastated thinking how I would live life, see kids grow up but step by step I am here almost 6 years later. I had no family history or knowngenetic predisposition to cancer. Stay as much as possible to your usual routine and do the recommended treatment plan by your doctor. I really hated them at times but grateful today. I finished treatment on 3/25/14!


    I totally lurked this site and never posted anything until this past year. 🤗 Many of these names are familiar and happy to see everyone well.

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  • SA8PG
    SA8PG Member Posts: 371
    edited March 2020

    Hi Mistiferilyn

    I am 5 years out. I did not have radiation. Although my oncologist highly suggested I did with the size of my tumor. I decided not to because I received a PCR after neo adjuvant chemo. I did agreed if I had residual disease I would do it. Good luck with your decisions We are all here to support you I know you will make the best choice for you
    Hugs


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  • Mistiferlyn
    Mistiferlyn Member Posts: 8
    edited May 2020

    Thank you for your replies, they truly helped. I did not need to have radiation after double mx. I am just praying there is no metastasis down the road or reoccurrence. All I can do is live my life and pray. I know I can't dwell on it but would be lying if I said I don't think about it. You ladies are all Warriors. Continue the fight and enjoy life. And again thank you so much for your replies. This site definitely helps and gives others like me hope.

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  • Mistiferlyn
    Mistiferlyn Member Posts: 8
    edited May 2020

    It's so nice to have this site with people who totally get it. I was wondering of anyone that's survived had lymphovascular invasion. My initial biopsy showed none but after my mastectomy, which was march 24th, it showed it. I had clear margins, negative lymph nodes and tumor went from 2.5 cm to 0.6 mm. I have been trying not to focus on a reaccurance or metastasis but it's hard. My PET scan prior was clean but I know that doesn't predict the future. I have a friend who passed a year ago at age 45 from TNBC that metastasized to her lungs and brain so I'm very nervous. Thank you all, you are all amazing survivors..and to you just starting best of luck.

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  • NorCalS
    NorCalS Member Posts: 288
    edited September 2020

    Hi. I am only 15 months out from original DX, but it’s great to see people check in and let us “newbies” know that there are long term survivors out there. Thank you guys for posting and letting us know that you’re out there living life. Please keep posting in.

    KSteve - you’re a great source of hope and inspiration. Thank you for letting us know that you’re doing well




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  • zfelicia
    zfelicia Member Posts: 4
    edited October 2020

    thanks for sharing this. I’m stage IV and I’ve been looking for positive outcomes, however they do not post, I didn’t however find one person on a different site-which with can’t seem to find anymore. Thanks kindly and be strong through your journey

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  • 5andcounting
    5andcounting Member Posts: 232
    edited October 2020

    first dx 2009 and local recurrence in 2013. Seven years out now from last chemo. Living life fully and trying not to focus on breast cancer

    Treatment on 2009 was lumpectomy and ACT. Treatment in 2013 was bilateral Mx with diep and carboplatin and taxotere.

    Thanks be to God, still here and NED. I have yearly breast MRIs and subscribe to my onc recommendation of “if it hurts more than 2 weeks, call me". Nothing usually does.

    Keep fighting, it's worth it. ❤️❤️

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  • NorCalS
    NorCalS Member Posts: 288
    edited October 2020

    5andcounting,

    Thanks for checking in. Great to hear that you’re doing well. Keep living a good life.

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  • Valstim52
    Valstim52 Member Posts: 1,324
    edited November 2020

    Hello All

    I'm 5 years out from TN stage 3b inflammatory cancer. Yup quite a bit to kill but it worked so far.

    I was bummed due to xeloda after rads was not introduced until a couple of years after my treatment. I am happy to not have had extra chemicals.

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  • SJSmith52
    SJSmith52 Member Posts: 10
    edited November 2020

    I am 3 1/2 years post lumpectomy for TNC Stage 1. Tumor .4 15 rounds of radiation. No Chemo. I did have to have two surgeries because the first time they didn't "get it all". This sounds very simple compared to the other stories posted here. I don't even know the language to use. I do know that I was totally unprepared for the diagnosis and treatment. I wish you the best of luck in your recovery. A positive attitude and good friends really do help. I am still very early stage and am aware that TNC often recurs. The best I can do for me and my family is to enjoy the life I have right here and right now.

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  • yellowdoglady
    yellowdoglady Member Posts: 349
    edited November 2020

    Hi All:

    I was diagnosed with TNBC the day before Thanksgiving in 2008. Surgery was December 19th. I turned up Stage 2B. Chemo started in January and ran for 18 weeks. Radiation went for 7 weeks and ended the end of July.

    Twelve years later I am alive and well. My mammogram last month was perfect. This is possible, so aim for hope and peace. Much love to you all.



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  • Valstim52
    Valstim52 Member Posts: 1,324
    edited November 2020

    What a wonderful thing to hear. So glad for you. Thank you for posting, as this gives all of us hope.

    Val

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  • santabarbarian
    santabarbarian Member Posts: 3,085
    edited November 2020

    Beautiful, YellowDogLady!

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  • yellowdoglady
    yellowdoglady Member Posts: 349
    edited November 2020

    There is a lot of hope. Just keep moving forward.

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  • sasamat
    sasamat Member Posts: 53
    edited November 2020

    I've been reading BCO for a while -- I'm in the middle of a diagnostic process myself and am having surgical excision of ADH or something more serious, in mid December. I posted for the first time today in the high risk forum.

    Now that I'm not just lurking, I should post on behalf of my wonderful mom. She was diagnosed with triple negative BC at age 69. She chose to have bilateral mastectomy (and pretty rigorous chemo) in order to avoid radiation and they found a pre or early cancer on the other side too. She went flat and has been really happy with that decision.

    She is alive and well at age 83. She's got a whole bunch of garden variety old age complaints (arthritis, diabetes, 2 knee replacements, gout, etc), but she's never had a recurrence! She was so worried she wouldn't get to see her 3 grandsons grow up, but she has, and now they're driving and shaving and contemplating university.

    One of the funniest things about the experience is that chemo liberated my mom from a very dated hairstyle. We're originally from the deep South and she always had this ... very specific hairdo. Maybe you have to be from the south to know what I'm talking about? My sister and I tried to talk her into something more modern for years. But it wasn't til the universe forced the matter that she finally saw the light and went with a cute pixie style :)



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