Encouragement Thread - Let's hear your survivor stories!

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Tabatha00
Tabatha00 Member Posts: 133
edited March 2016 in Triple-Negative Breast Cancer

O.k. so I want anyone who is a few years out from being diagnosed with TNBC to post here with your encouraging story OR the story of someone you know.   We have GOT to put a positive spin on this TN thing.  It gets into our head and that's what we focus on.   LET'S FOCUS ON THE POSITIVE!!!!!   SHALL WE????

Sure, I'm at the beginning of my journey as I'll be starting chemo mid-August (gotta get rid of the pesky kidney pole dancing tumor first) but we need people to step up with some encouraging stories we can hang onto and read when we are feeling down!!!!

SO, FOR ALL YOU SURVIVORS OUT THERE........LET'S HEAR YOUR STORY........OR THE STORY OF SOMEONE YOU KNOW!!!!!!   This band together and get the positive out!!!!   Just because we are TN does NOT give us an automatic death sentence...........OH NO MA'AM IT DOESN'T!!!!!! 

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  • kellyless
    kellyless Member Posts: 68
    edited July 2009

    Here here!  I'm 3 rads into 33 - tired, achy and cranky - weird fuzz on my head where there should be HAIR growing.  Encouragement would be AWESOME!

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  • debbie6122
    debbie6122 Member Posts: 5,161
    edited July 2009

    Tabatha00- i agree with your ealier post on the TN it dosnt matter what your er/pr staus is, cancer is cancer and there are good and bad stories with all of them, and the five year pill still does not guareentee anything, my DD was dx with bc 2 years ago she was TN she is doing great, i know its not a long time since she was dx but she jsut had another ct scan and other test she is doing great and she loves her new boobie too, in fact she told me just last night she feels more sexier now than she did 3 years ago! We both also had the varient of uncertain significance, still not sure i even needed to know that, because it hasnt done us any good, no info on it as yet! You are in my thoughts and prayers, lets all stay positive and kick some BUTT!!  (((hugs))))

    debbie

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  • maryannecb
    maryannecb Member Posts: 1,453
    edited July 2009

    My real life friend  just celebrated her 50th birthday. She was diagnosed with TN disease 8 years ago...the first time, stage 2,no nodes,had chemo...second breast...DCIS...6 years ago.  She continues happily NED. She completed her recon last year and feels fabulous.

    Many long time survivors are off living their lives...so dont get discouraged if not a lot of people report in.

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  • sftfemme65
    sftfemme65 Member Posts: 790
    edited July 2009

    I am feeling like a survivor.  I finished treatment in Nov 08 and I will be having my exchange for implants Aug 30th.  I love hearing from people that had positive nodes and are years out.

    Teresa

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  • lexislove
    lexislove Member Posts: 2,645
    edited July 2009

    My ex boyfriends mom was diagnosed New Years Eve 2004. Huge tumor, like mine, no nodes and TN. She had a double mastectomy and chemo ONLY...still goin strong!

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  • nosurrender
    nosurrender Member Posts: 2,019
    edited July 2009

    Hi there!

    I was diagnosed with very aggressive TNBC that was headed toward the chest wall and I was told my prognosis was not good.

    This September I will have my EIGHT YEAR anniversary of that date.

    I did CMF and had lumpectomy and radiation.

    My sister was diagnosed three years after me, TNBC, same deal, she did lumpectomy and rads and skipped chemo. She will be celebrating 5 years Ned.

    I know we hear a lot of horror stories, but girls, this sucker CAN be beat.

    Love,

    g

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  • Tabatha00
    Tabatha00 Member Posts: 133
    edited July 2009

    Now THIS is more like it!!!!!   We NEED survivor stories!!!!!    We need to hear them when we are down or think this is never going to end.   I'm at the beginning of this journey and I already feel like it's never going to end.   lol

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  • Rainenz
    Rainenz Member Posts: 93
    edited July 2009

    Ok I was 1st dx with TNBC in Jan 1997 had lymph node involement went thru Lumpectomy followed by Chemo and Rads.  Went well for 9 & 1/2 years when I was dx with a new primary in other breast.  This one was very aggressiveand even with all my follow ups had loads of positive nodes and lymph/vascular invasion.  Was given a very poor prognosis had Chemo and rads.

     I am now 3 years out from that dx and doing well.

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  • JerseyMom
    JerseyMom Member Posts: 46
    edited July 2009

    Dx TNBC in Dec 2006. Did mastectomy, chemo and radiation. I have my 6 month appt with Onc in a couple of weeks and stressed about it. I guess if I stay cancer free for another whole year, then I will breath easy.

     -Ren

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  • cheranthia
    cheranthia Member Posts: 65
    edited July 2009

    I was diagnosed with a very large, agressive tumor (see my stats) over two years ago now. After chemo, my tumor had completely disappeared. It was a good thing my onc had a "clip" placed to mark the site of the tumor, because that's all the surgeon had to go by when I had my lumpectomy!  My onc was very encouraging and even said, "You made my day." I said, "Oh yeah? Well you made my life!" My next follow-up is in a couple of weeks, but so far I am still cancer free. It would be nice if there were more they could do to ward off recurrence, but many of us TN girls do respond extremely well to chemo and I am sort of glad we don't have to follow up with 5 years of Tamoxifen. May as well look at the bright side!

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  • Karen09
    Karen09 Member Posts: 320
    edited July 2009

    That's a great story Cheranthia! 

     I'm just starting my journey too Tabatha and looking for all the positive stories I can find.  I'm tired of hearing all the doom and gloom of triple negative.  We're all strong and going to fight!  :)

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  • cp418
    cp418 Member Posts: 7,079
    edited July 2009

    I just wanted to chime in that one of my oncology nurses was TN and is at least 13 years out.  She had thyroid cancer when she was very young then BC in late 40's or early 50's.  She had lumpectomy, chemo and radiation and is now in her 60's.  Forget to mention I think she had positive node(s) too.

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  • renahen
    renahen Member Posts: 12
    edited July 2009

    Would you believe 23 years? Although there was no HER test in 1986, my oncologist is certain that I was triple neg. because I fit the profile: diagnosed at 37 and later tested positive for BRCA2. There may be many more long-term triple neg survivors like me, but it's hard to know because of the fact that we weren't labeled triple neg when we were diagnosed. That doesn't mean that were weren't, just that the label didn't yet exist. That's an interesting thought, isn't it? I had 22 positive nodes, and I'm alive and well all these years later. I wish that for each and every one of you. Rena

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  • tibet
    tibet Member Posts: 545
    edited July 2009

    hi Cheranthia

    What kind of chemo did you get?

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  • sftfemme65
    sftfemme65 Member Posts: 790
    edited July 2009

    Rena,

    22 positive nodes???? wow.  I was just going to say how I would love to hear from some node positive ladies.  That is awesome!

    Teresa

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  • rumoret
    rumoret Member Posts: 685
    edited July 2009

    My mother dx triple negative at 69 years old in 1999. She had lumpectomy and radiation......she is going strong.

    Hugs,

    Terry

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  • slanderson
    slanderson Member Posts: 152
    edited July 2009

    I just celebrated my 4th year since diagnosis.  I had a lumpectomy, 6 rounds of TAC, and radiation.  I had implants after everything was over.  I work out 3 times a week and eat right.  I have to say that I feel great!!  I have made my life much healthier than it was pre-diagnosis.  I can't predict the future, but my exercise and eating right give me peace knowing that I am doing everything that "I" can.  Right after treatment, I used to stress about not exercising and eating right.  Finally, I thought, this is ridiculous.  Why not just do it and quit stressing about it?  Stress is one of the causes of cancer, right?  Anyway, there is life after cancer!!!!!!!!!!!!!!!!!!!!!

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  • HollyHopes
    HollyHopes Member Posts: 497
    edited July 2009

    two years out and no problems...hooray for every day cancer free!!

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  • tibet
    tibet Member Posts: 545
    edited July 2009

    Do we TN have less risk of recurrences than ER+ after 3 yrs out?

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  • angelsabove
    angelsabove Member Posts: 363
    edited July 2009

    newalex,

    That is what I have heard. I know my Oncologist said if we can get to 2 years then the re- occurance drops down substantially. I am not sure how it all works. I have been told we have the BEST LONG TERM statistics. Maybe someone else can post and help us.

    God Bless You All

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  • lexislove
    lexislove Member Posts: 2,645
    edited July 2009

    Yes you ladies do!!!

    I have a friend who I met through a local support group.She is TN...me?..I'm TP (Er+,Pr+Her2+). She was terriefied about being TN..reading the net and all this stuff. I was terrified of being Her2+! *Go figure*

    Anyways...I saw my onc for one check up and asked him about me and my friends"aggressive cancers". This is what he told me....agressive..yes. BUT being a TN or a Her2..you get to 3 years the recurrence rate drops DOOOOOOOWWWWWNNNNNN!

    The term aggresive does not scare me anymore and it shouldn't scare you ladies either....

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  • angelsabove
    angelsabove Member Posts: 363
    edited July 2009

    Lexilove,

    Thanks for the reply... I just never know what to do anymore. I DO try to stay positive, and love all the encouraging stuff.... BOY DO I..... 36 years old and 3 kids....I just try to believe that if for whatever reason God brings you to it. He WILL bring us through it.

     Lets keep those positive stories going.......

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  • lexislove
    lexislove Member Posts: 2,645
    edited July 2009

    One foot in front of the other..one day at a time. You were recently diagnosed..and still in treatment I would guess. Everything is still raw...emotions. When you finish up with rads and are "finished"...life continues.

    Kiddies need the park, laundry needs to get done, the kitty box has to get changed...you get me?

    I get you, I was 30 diagnosed with an almost 2 year old. I will be celebrating MY 2 years out in September.

    Be well.

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  • nonijones333
    nonijones333 Member Posts: 120
    edited July 2009

    Hi Ladies, yup another 22 year survivor here. I know I was TN because I had a new primary in the other breast 6 years ago which was also TN and had to dig up my old pathology and clearly states hormone negative. Total of 22 years Ned. No Chemo either, first time just lumpectomy and radiation, second time just bi-lateral and did not do chemo again. Idc stage one first time/ second time a-typical medulary stage 2. Enjoying old age and loving the fact I'm getting old, now 62 diagnosed at 39. BIG HUGS TO ALL

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  • weesa
    weesa Member Posts: 707
    edited July 2009

    I'm a seven year survivor, stage 3a, many positive nodes, hormone receptive, negative for Her2. I have had dose dense ACT, radiation, femara, and 17 surgeries, including two lumpectomies,mastectomy, reconstruction, two rotator cuffs. I battled side effects from all the AI's for seven years, and finally had to give them up a few months ago, because all my tendons were becoming inflamed and tearing off where they attach to the bones.My orthopedic surgeon said it was the worst inflammation he had ever seen. I finally had my estradiol checked with a sensitive assay and it was extremely low. It was doubtful the AI's were helping me much! Once off the wicked little pill, my symptoms vanished with in days. I am fine, work full time, still worry some...

    At the same time I was diagnosed, November of 2002, a good friend was diagnosed with inflammatory. She is very well, too!  So there is hope! It is so clarifying to fight for your life; I've given up all sorts of stupid neurotic habits and know what really matters now.

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  • fmakj
    fmakj Member Posts: 1,278
    edited July 2009

    I am very relieved to hear that there are others out there that have had only radiation with TN!  I was told that I don't need the chemo, but notice that there are many out there that have close to the same diagnosis as I do, but seem to have gone through chemo.  I have been a little worried lately.  Had a lumpectomy in June and today was my first rads tx.  I go for 33 (including boosters).   I have also joined a clinical trial for WBI vs PBI and am getting WBI. Any other TN having only rads after lumpectomy?  ML

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  • BrendaLea
    BrendaLea Member Posts: 15
    edited July 2009

    I was dx'd at 31 years old with stage 4 and TN. Little buggers went right for the lungs.  I had a 2 year old at home and it was 2 weeks before my wedding date.  Talk about a buzz kill.  That was 3 years ago and I'm doing great.  I finally got my butt back into shape by working out 3 times a week, which is something I never did before.  I am currently waiting for my reconstruction and looking forward to it.  And, I realized that I actually don't look bad in short hair.  Cutting it was something I never had the guts to do until I didn't have a choice.  My son is now 5 years old and is starting school in September.  This was something that I was afraid I was going to miss and now I'm expecting to be around for college.  Don't give up girls....Inner strength will get you thru this.

    Brenda

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  • renahen
    renahen Member Posts: 12
    edited July 2009

    I love this thread! So many positive stories and great attitudes! Nonijones, looks like you and I are the "veterans." I'll turn 60 in a few weeks, and I remember when I thought I wouldn't live to see 40. Lexislove, I was older than you (37), but my daughter was not quite two years old. I know exactly what you mean: NOTHING is more important than being mom. I used to get my chemo and then pick up my daughter to take her to the park. Life goes on. She is 24 now, and my three cats are my babies now (talk about scooping the kitty litter!!). Best to all, Rena

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  • cheranthia
    cheranthia Member Posts: 65
    edited July 2009

    Hi Lexislove,

    I just now saw your question. I had 4 rounds of A/C followed by 4 rounds of Taxotere.  So far, so good!

    Cheranthia

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  • Boo46
    Boo46 Member Posts: 539
    edited August 2009

    Hi another positive TN here.Laughing I was  diagnosed 6/06, Trip neg. stage 3a, 5 pos nodes. Just had all my 3 year check ups. Doing great!

    Sue

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