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Long term survivor examples.

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  • momsurvivor
    momsurvivor Member Posts: 2
    edited September 2014
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    I was triple neg. Diagnosed 2003 stage 2b. Lumpectomy. Chemo. Rads. Been NED since then. I had A/C chemo. No tamoxafin. They said it didn't help trip neg. Has that thought changed??

    Anyway just thought I'd share since I'm 11 years out. Happy

  • MomMom
    MomMom Member Posts: 334
    edited September 2014
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    Momsurvivor,  Thanks for your post!  What fantastic news to be so far out from diagnosis.  It's so encouraging for all of us.  Congrats!!

    No, Tamoxifen is still not helpful for TN.

  • anothernycgirl
    anothernycgirl Member Posts: 821
    edited September 2014
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    THANK YOU for the encouraging posts!    It helps so much for those of us triple neg!

    JoeyJames, I had AC before the taxol, and I, too, was concerned about its effect on the heart because I have a congenital heart murmur.   I had an echocardiogram before starting treatment, and both my cardiologist and my onc felt that the AC would be ok.      I did, however, end up having only one AC dose together, but my white count went so low, even with neulasta, and other side effects.  After that, the onc decided to give 3 rounds of just cytoxin, and then 3 rounds of adriamycin.     I trust my oncologist, and although the treatments go on for more weeks, perhaps it was easier to tolerate this way.

    I send BEST wishes to all here!

  • megomendy
    megomendy Member Posts: 63
    edited September 2014
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    I think AC is the norm for us TNs. Plus Taxol.

  • Carol99
    Carol99 Member Posts: 5
    edited September 2014
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    mom survivor, thanks for posting, so encouraging!  I'm coming up on 1 yr. mark since diagnosed.  I too had only A/C + BMX.  

    Thanks to all who are sharing their survivorship stats!!!

  • Ltwig
    Ltwig Member Posts: 1
    edited September 2014
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    hello.  I thought I would post my mom's story here.  My mom was diagnosed with stage iv bc in 1989. By the time she was diagnosed , it has spread to the lymph nodes.  At that time there was not testing as there is now, but the doctor agrees that it was most likely triple negative.  It was very aggressive and invasive.  She tried chemo and radiation.  She was deemed as terminal.  She came home to spend Christmas with us before trying her last ditch effort which was a bone marrow transplant (which I know is no longer considered a course of treatment).  She did another round of chemo and had her bone marrow returned.  She has been in remission now for 25 years.  

  • redheeledwomen
    redheeledwomen Member Posts: 74
    edited September 2014
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    Thank you for starting this forum.  I am newly diagnosed with TNBC one month after my 40th birthday and hope to be able to follow and post to this forum years after I've been cancer free.  The post are so positive and inspiring because out on the world wide web is nothing but negativity about TNBC.

    Thank you Thank you and survivors keep on posting!!!

    BTW- My Onc did not recommend chemo before surgery due to the aggressive nature of TNBC.  I am currently going through chemo no rads and just completed my third chemo cycle and have only one left.  Taxotere and Cytoxin were the course of treatment recommended for me due to my age.

  • hotrodgreg
    hotrodgreg Member Posts: 7
    edited January 2015
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    Last November 2013 my wife was diagnosed and treated for locally advance stage 3b
    triple-negative, with 10 positive nodes. She is NED following
    completion of chemo and radiation therapy. She had the standard
    chemotherapy a combination of paclitaxel, adriamycin, and
    cyclophosphamide and carboplatin in her second regimen. Knowing the
    risks of this subtype I've been doing research on how best to give her
    the best chances of non-recurrence.  Although she is not a "long term" survivor we are very excited that she had a pathologically complete response to therapy and wanted to pass along the great news.

    What bothers me is that once you've completed the treatment the doctors are essentially "done", albeit standard follow-ups.  There should be far more emphasis on what's out there in regards to diet, exercise, etc. to help prevent the recurrence of TNBC considering the not-so-good statistics if it does. That is alarming to me.  Have you ladies read about copper depletion therapy?  That is one that sounds promising in keeping the monster at bay.

  • placid44
    placid44 Member Posts: 179
    edited September 2014
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    Congrats on the pcr. I had a partial response. 

    Patricia Prijatel is a TNBC survivor with a blog and book about ways to reduce recurrence of TNBC. (eg research on foods, exercise). I found it helpful. Hormonenegative.blogspot.com

    Since I have high blood pressure, I switched from one drug to another, propranolol. In a couple of early european studies, it has been shown to possibly help reduce recurrence of tnbc. It is a beta blocker that blocks both channels of stress hormones. It may help reduce inflammation. 

    Another big thing for tnbc is maintaining a healthy weight. I am working on that...about 20 lb. over.

  • Gorilla12
    Gorilla12 Member Posts: 12
    edited September 2014
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    Yes I had AC and did fine! Here is to 10+ more years NED!!!

  • Dragonfli
    Dragonfli Member Posts: 3
    edited September 2014
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    Hi ladies, thought I would stop by and add I am still around & healthy. October 2,2014 will be 11 years since I was diagnosed with Grade 3/3 IDC Triple Neg.  I was part of  the original chatters back in 2003 when this board was still so new. I have been away, and for some reason thought I should stop by. Please feel free to message me, and I am in B.C. Canada.....I wish all of you only positive thoughts, inspiration, and to the strength to beat this disease...:) Hugs to all

  • allydp
    allydp Member Posts: 361
    edited September 2014
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    Dragon, thanks so much for thinking of us and checking in. Huge congratulations to you on celebrating 11 years! You are such an inspiration! 

  • brookezine
    brookezine Member Posts: 6
    edited October 2014
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    Thank you everyone for posting on this thread. I am triple negative and my tumor grew back between chemo and mx, and they found it in one node. They have changed my recurrence rate from 19% to 60%. I'm scared. This has given me hope, especially since I'm super emotional today. Thank you so much, and congrats to the survivors!

  • redheeledwomen
    redheeledwomen Member Posts: 74
    edited October 2014
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    brookezine- sorry about the recurrence but I am glad it was caught. 

  • netty46
    netty46 Member Posts: 68
    edited October 2014
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    Hi everyone 14 yrs ago today I found out I had BC. Back then that was it . No mention of TN at all.  I had 6 rounds of CMF then 36 rads. Lumpectomy was first . My nodes were clear . It was grade 3 .

    Margins were not clear and they had to go back in.  I wanted the best medical care and went to Slian Kettering in NY.

    After like 4 yrs I would just go to my reg doc and get bloods done and had my mammos.

    I moved to Florida and saw an oncologist there who told me no need to see him I was in the clear .

    June 2012 I saw redness on breast and like a cyst . I ran to a surgeon I knew . He wasted no time . Cat scan showed nothing neither did mammo .

    That was not good enough for him do he had me in the OR within two days . He said things look good but he called me with path report two days After too tell me I had cancer . Yup!! Right back in same breast .  I had a Diep flap done on the breast in 2005 and the recurrence came back in reconstructed breast.

    Took myself too Moffit another excellent cancer hospital. 

    Talk about scans. I had pet scan, MRI . Cat scan . MRI of my entire spine , bone scans , u name it !! 

    They had to make sure no cancer anywhere else.

    I had 6 rounds TC. Yes I was radiated again. It's possible .

    I had surgery . My docs said CPR . The path said residual cancer . My docs said for them it's still CPR because 90 percent cleared. Cancer was never in my nodes.  My CTC was zero at diagnosis.

    Psychologically it was a hard impact . 12 yrs then bam !!

    I get MRI of chest . My last was clear . I also get bloods .

    I am brac negative .

    I met a few women on this site with similar experiences that were very supportive .

    I don't focus on the TN part.   When it never existed it did not cause so much stress on women's minds. There r thousands walking around that never knew and r alive . 

    I had breast cancer that's it . 

  • redheeledwomen
    redheeledwomen Member Posts: 74
    edited October 2014
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    netty46- Thank you for sharing your story with us.  MO and the Medical community make it seem as if TN is something brand new.  Its intetesting to read that it could have been around as long as any other breast cancer.  That brings a level of relief.  Thanks again.

  • BanR
    BanR Member Posts: 238
    edited October 2014
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    Thanks for sharing your stories everyone!! Really inspiring... 

  • lamabq
    lamabq Member Posts: 3
    edited October 2014
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      In 1999 , at the age of 49, I found a lump, and was diagnosed with triple negative breast cancer. I had a lumpectomy followed by chemo and radiation. I will be celebrating 15 years cancer free 11/5/14.  I want to encourage all of you, this is not a death sentence!! 

  • jramick
    jramick Member Posts: 30
    edited October 2014
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    This is great!  All of the stories here are so encouraging even to those of us celebrating anniversaries with no recurrence!  I am happy to say that this month, I am celebrating my 5 years from Triple Negative.  It is that common but OH so relieving milestone we all hear about and then you look for the stories of 9 years,10 years,12 years on and on. So thank you ALL for sharing!  I am lucky that I had a complete response to chemo!  For the newbies out here.....it is that life line that we should all cling to that helps us through...HOPE!   

  • jramick
    jramick Member Posts: 30
    edited October 2014
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    A Note:  I was diagnosed in July 2009, chemo finished by October, lumpectomy in November and radiation by Feb 2010.  I count my final chemo treatment in October as my anniversary since my lumpectomy came back no cancer left.  Everyone I understand counts anniversaries from different dates - they should ALL be celebrated!!!!!!!!!

  • Kaos
    Kaos Member Posts: 10
    edited November 2014
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    I am a long term TN.  I was dx on my birthday in 2004 told to go home and get things in order.  Well .... no thanks!  I did everything suggested plus alternatives, continued to exercise and eat health; and here I am almost 11 years later :)  I am actually having my second round of reconstructive surgery with final stage of implants on November 3rd.  First reconstruction failed.  It is more than possible to live a long and happy life.  Although if I am honest it took me many years to not think about the beast on a daily basis; now only sometimes.  Be strong, fight, never give up!

    Kris in Alberta, Canada

  • Luvmydobies
    Luvmydobies Member Posts: 476
    edited November 2014
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    Wow Kaos, you were Stage I and they told you to get things in order?!! That's crazy. Glad you're doing well though!!! 

  • MomMom
    MomMom Member Posts: 334
    edited November 2014
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    Kaos,  Good for you!!! Thanks so much for the post!!!

  • BanR
    BanR Member Posts: 238
    edited November 2014
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    Wonderful posts from beautiful women from all across... keep writing ladies!! Much love...

  • SlowDeepBreaths
    SlowDeepBreaths Member Posts: 6,702
    edited November 2014
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    Gives me hope to read this thread. Thank you to all who share.

  • netty46
    netty46 Member Posts: 68
    edited November 2014
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    Koas the doctor who scared you like that should get his brain in order .

    Your stage has 97% survival .

    To scare you like that was ridiculous .

    You will be fine !!

  • mommak62
    mommak62 Member Posts: 1
    edited November 2014
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    Wow! So encouraged to hear your story!! Gives me hope that I can do this too and watch my kids growing up. Diagnosed April 2014 so still early in the game. Any hints or secrets to your success appreciated! :)

  • moderators
    moderators Posts: 8,074
    edited November 2014
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    Mommak62-

    Welcome to Breastcancer.org! We're so glad you've joined our community, we hope you find it to be a place of support and encouragement. If you need any help navigating the boards or finding a forum that's right for you, please don't hesitate to reach out to us. We hope to see you on the boards!

    The Mods

  • sunandsnow
    sunandsnow Member Posts: 17
    edited January 2015
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    I had a biopsy 9/2014 (I am a mom of young kids, 42yrs old) and came back DCIS. I was completely calm about it and prepped myself to move all my treatment to a cancer center and do a lumpectomy and radiation. I have a friend who is a Doctor of medical research for cancer and he asked me to get my markers. Turns out they were all negative. The NP that called me back from the first hospital painted a very scary picture. Told me i would be doing chemo for sure, told me she had a woman who had TNBC and they couldn't get her tumor to shrink and on and on. When I told my doctor friend over the phone about my markers I could tell from his tone that it wasn't good. I spent a weekend thinking the worst and had to be on Xanex just to get out of bed.

    The next morning i went to my new doctors and i left and never had to take Xanex again. They explained i was stage 0, even if it had spread a little I would stage 1, and that the markers were not important at this point and were so calming. We immediately did genetic testing and they ordered an MRI to get a closer look at nodes and the mass. It came back clean except for the original mass. I also tested negative for BRACA1 and 2. I opted with strong recommendation from my surgeon to do a mastectomy. I already knew in my head thats what i wanted anyway.

    By the grace of god when they got in there it was non-invasive and my sentinel node biopsy came back clean as well. So now i am just in reconstruction. I tell you this story for two reasons. First most people with DCIS don't know their markers. I searched and searched and couldn't find anything on TN DCIS. So if someone is searching that hopefully my story is hopeful.

    Second my grandmother was diagnosed with a mass in the same spot as mine when she was 38 in 1969. She felt it. She said she went in for what she thought was a biopsy and came out without her left breast. She just turned 84 yesterday. My genetic counselor also had her genetic tested once I was diagnosed and she also came back BRACA negative. So I cant help but think that chances are high she could have had TNBC at the time because of her age, her BRACA status and my mass being TN. If so she would be a 46 year survivor with 7 GREAT grandchildren.

    I know so many more of you have been through so much more but I thought maybe my story, and my Nana's could give someone new some sort of calm. Xoxo!

  • Luah
    Luah Member Posts: 626
    edited January 2015
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    I was diagnosed in September 2009 with multi-focal TN, 2.5 cm and 1.5 cm. Lx right to the chest wall with only a 1 mm clear margin on deep edge. Lympho-vascular invasion. SNB showed 1 node with ITCs, another with micromets. Opted for ALND (additional nodes clear), then did dose dense AC and weekly taxol, then rads. Fortunately I was able to work throughout, on reduced hours, and pursue my passion of skiing, every weekend. I was also part of an exercise/chemo research study that "forced" me to do walk/run and do weights regularly... that started me on a healthier path that I try to keep up today. I have had a few scares over the years, but so far, touch wood, I am healthy! All the best to the ladies here... these discussion boards were a lifeline for me.