2-Year Her2+ Cancer-free Roll Call

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  • lkc
    lkc Member Posts: 1,203
    edited November 2014

    Here's my post from may 2014;

    I am writing this with enormous gratitude that I have reached this 9 Year BC anniversary. I've recently returned from my 6 mos check up, and finally had the nerve to ask my sweet Onc if he thought I would make it back then. He smiled and told me if anyone would, he thought it would be me. You see back then it was a recent development that an additional classification of C was added to the Stage 3 cases.There was only Stage III A. and B then. This meant for me that had I been diagnosed a few years earlier I would of been classified a stage 4 and would not have been a candidate for surgery, or the treatment I received.( My onc was part of the team at MD Anderson that pushed for this additional classification to provide an option of CURE for cases like myself) Anyway, to throw another ratchet in, I was also HER2 positive and when he told me that he looked really disturbed. I was actually happy since I knew I would probably get the newly approved Herceptin and just maybe it would work for me. He told me he had seen HER2 cases(BEFORE Herceptin) to be the worst BC prognosis and did not have any long term data for a case like mine. However, my dear Onc, held out his hand to me and said 'We're going for the Cure for you" I remember telling him then to throw everything he could at me. You see, I had just lost my Mom to Met BC and he was also her Onc. and we all had walked the long road of metastatic dx together.

    That was 9 years ago and I am well. Living Large! I don't let a day pass without thanking God for my health and blessings I have in this life. I am blessed to share my life with a wonderful man who stood by me, while some members of my family ran for the hills. I have 2 beautiful girls and healthy happy grandchildren and a new baby boy coming in August! I am blessed to have my faith , and have truly long time dear friends. Upon my return home I went back to my career in research, but it would be Breast Cancer Research this time. How cool is that to be able to do that?! So many new treatments and lots of good outcomes.

    Anyway. I am posting this to say hi to my old timer sisters on this board and also to let the newer sisters, know my story. There are lots of us out there.

    I wish all a gentle road on a journey no one wants to go on.  

  • lago
    lago Member Posts: 17,186
    edited November 2014

    Congratulations lkc! what a wonderful story. So glad you came back to share. See you in 9 more years.

  • sandiesau
    sandiesau Member Posts: 16
    edited November 2014


    Hi everyone  I just had my 2 year mammogram done and am anxiously awaiting my result . I'll fill you in when I hear anything.  Sandi 

  • Alicethecat
    Alicethecat Member Posts: 535
    edited November 2014

    Hello IKC

    Thank you so much for posting and reposting!

    So happy for you - and for your research work. It gives us hope.

    So pleased it has turned out so well for you.

    Alice


     

  • sduch1
    sduch1 Member Posts: 104
    edited December 2014

    I am wondering 2 years from what? I refer to the BCIRG study quite often to try and keep my anxiety at bay but I get confused when they say 1, 2, 3 years etc if it is from diagnosis or end of treatment. I am 3 years out from diagnosis, 2 years out from ACTH, but only 1 1/2 years out from finishing my Herceptin. I am in a weird place right now where it feels long enough ago that I can forget that it happened or don't think about it every day but then will have sudden anxiety attacks and become consumed again at the thought of recurrance....mostly because I feel like I am still in that critical window and can't get through it fast enough! I also get confused why the 10 year recurrance rate in some of the online predictors is higher than the 5 year rate when the highest rate of recurrance for ER-PR-HER2+ is supposedly in the first 2-3 years?? And the BCIRG results seem to support this. I would love any insight.... I hope everyone is enjoying the holiday season! I have a 3 1/2 and 5 year old and it's been a lot of fun this year, mostly because I feel good..my daughter was 6 months old when I was diagnosed and it's amazing to see the little girl she has become. In some ways it truly feels like the BC thing was a lifetime ago.

  • lago
    lago Member Posts: 17,186
    edited December 2014

    sduch the first 2-3 years is the highest for recurrence for everyone but it appears the more aggressive (like triple negative and HER2+/hormone negative) tend to recur even more often in the time period. But at the same time if you are hormone negative and you have passed the first 3 years your chances of recurrence goes way down and you are almost considered cured! I count the 2 years from NED date but it's best to as your MO that question. My 1st treatment was surgery so that made me NED. For those who had chemo first and surgery last it might be from the the last surgery.

    Here are my famous speeches I post for those who worry about recurrence:

    seat belt speech:

    You don't assume you will get into a car accident every time you get in your car. You do put on your seat belt and drive carefully. Same with breast cancer. Eat right, maintain a healthy weight, exercise, and take your hormone therapy (if prescribed). No reason to think you are going to get mets until you actually have a symptom.

    shit happens speech:

    Some people win the lottery and become millionaires too but do you really think that's going to happen to you? Shit happens. Sometimes good shit, sometimes bad shit, but most of the time shit doesn't happen. Don't assume shit is going to happen to you.

    Remember the word "if" is in the middle of the word "life" for a reason. As long as you have life you will always have "what ifs". It's your MO's job to worry about those cancer "What Ifs"

  • Girlstrong
    Girlstrong Member Posts: 438
    edited December 2014

    lago...I've been on this board since diagnosis and have read your speech on more than one occasion. I'm smiling right now and saying "thank you" because what you say is sooo true. As for the debate on "how to calculate how far out you are"..I talked to my MO about this. She uses the date of diagnosis. She admitted that some docs use the surgery date but in her words"it's just semantics" because most of the time initial diagnosis and surgery date areonly separated by a matter of months. Based on that, I am celebrating 17 months !!!!!!! Looking forward to this summer when I can ring the bell for my 2 year anniversary:) in the meantime I'll just keep thanking God.

  • lago
    lago Member Posts: 17,186
    edited December 2014

    You'll be ringing that bell before you know it.

  • sduch1
    sduch1 Member Posts: 104
    edited December 2014

    Thank you for your responses, and for your speeches Lago! Using my date of diagnosis, I feel like I've come a long way. It will be 3 years in February. It's when I count from my last Herceptin that I feel like I am not that far out. I guess I am 2 1/2 years out from surgery...a lot of milestones to keep track of. I had TH first, then surgery, then AC, then radiation and H. Wishing everyone continued health and happiness in the new year!

  • LizA17
    LizA17 Member Posts: 159
    edited December 2014

    I had my 2 yr cancerversary on Dec. 7th! Looking forward to a long life.

  • lago
    lago Member Posts: 17,186
    edited December 2014
  • jfrone
    jfrone Member Posts: 11
    edited January 2015

    Hello there! I remember when I was first diagnosed, I was desperate to hear success/survival stories from other women who were HER2+. I wanted to share that this coming May 2015 will mark my 9 year anniversary of being cancer free (I was diagnosed at the age of 32)! I had a 3cm lump in my right breast with 1Lymp Node infected. After a mastectomy, chemo and herceptin, I have had a clean bill of heath.

    Please know that there is a light at this end of this tunnel! In a few years you will be sharing your story of many years cancer-free as well.

    Peace and Health to All!


  • Vicki2012
    Vicki2012 Member Posts: 2
    edited March 2015

    I am new to this site (ILC/Her2+/Stage 1/Grade 2) and in August of this year will be 3 years clean!! I had a lumpectomy, chemo (6 rounds), radiation (7 weeks), Herceptin for 1 year. Arimidex since April 2013. Zometa infusions for 1 1/2 years (every 6 months). Even though being Her2+ was what made chemo a must for me, I have been told by my surgeon, onocologist, nurses, etc., that it is a GOOD thing to have because they know how to treat it and stop it! If it wasn't for the heart issues that Herceptin can cause, I'd prefer to stay on it forever!ha

  • Moderators
    Moderators Member Posts: 25,912
    edited March 2015

    Hi Vicki2012, We just want to chime in and say welcome to BCO and so glad you have found us, and are sharing your experience. So glad the Herceptin is doing its job well for you!!!

  • lago
    lago Member Posts: 17,186
    edited March 2015

    Hi Vicki. Congratulations on 3 years NED (No evidence of disease)

  • DebbieB
    DebbieB Member Posts: 161
    edited March 2015


    Congratulations on reaching the 2 year milestone.  It is a big one.  I am coming up on my 14 year milestone.  When I was 6 years out I did find out I had heart damage from the chemo.  Other than that I am doing great!  

  • lago
    lago Member Posts: 17,186
    edited March 2015

    Congratulations Debbie! 14 years. Did you do a trial for Herceptin?

  • janincanada
    janincanada Member Posts: 258
    edited March 2015

    Will be seven years April 4th since my surgery. All is good with the exception of some gifts from chemo such as neuropathy and osteoporosis. Exercising and generally enjoying life. Have a unrelated (I think) medical problem now but I am still NED.

  • Sassa
    Sassa Member Posts: 1,588
    edited March 2015

    I just returned from my eight year annual check up (my oncologist measures the time from the end of my 4 AC).

    I am fine and feel great.

  • Poconos3
    Poconos3 Member Posts: 6
    edited March 2015

    Thank you and YAY to all of us!!! XOXO

    On Arimidex now; it's kicking my butt:/ Terrible side effects; hope they lessen.


  • giglgrl
    giglgrl Member Posts: 81
    edited April 2015

    Diagnosed Feb 09, last Herceptin treatment Aug 11. So almost 5 years free for me!

  • fightinhrd123
    fightinhrd123 Member Posts: 633
    edited April 2015

    I can never remember which threads like this ive posted on already, and dont here much anymore, but i will be 7 years out in may :)

  • lago
    lago Member Posts: 17,186
    edited April 2015

    Congratulations Fightinhard!

  • emily_the_cat
    emily_the_cat Member Posts: 29
    edited April 2015

    I saw someone else asked this, but I didn't see an answer - what event are we counting from? Dx, surgery, or end of treatment? It seems like a lot of people are counting from Dx, but to me counting from surgery makes more sense, as that is the first day I was cancer-free. Thoughts

  • Tinkerbells
    Tinkerbells Member Posts: 211
    edited April 2015

    Emily - depends, but it seems many count from time of diagnosis. I had surgery first, so I am counting from there. It's a 2 week difference, anyway!


  • ahdjdbcjdjdbkf
    ahdjdbcjdjdbkf Member Posts: 645
    edited April 2015

    I just passed 3 years and still going. SO HAPPY about it despite the beast of a road it has been.

  • lesliecusana
    lesliecusana Member Posts: 97
    edited April 2015

    Anyone here have a mamo with area of concern to watch turn out to be benign? I am 1& 1\2 years out and have reconstruction next week! Really want to make 2yr mark!

  • momwriter
    momwriter Member Posts: 310
    edited April 2015

    Hi,

    The two times I've had mammos since dx I got callbacks both times. Then they did Ultrasound. This last time in November they then did a core needle biopsy (stress much?!). And in the end, after all that stress, it was benign. Hoping yours is as well!

    I'm at 2.5 years.



  • lesliecusana
    lesliecusana Member Posts: 97
    edited April 2015

    Thanks momwriter! Very encouraging! Congrats on 2&1\2 years!

  • ahdjdbcjdjdbkf
    ahdjdbcjdjdbkf Member Posts: 645
    edited April 2015

    These milestones are just incredible and encouraging! I had revision surgery as well as VLNT surgery a few weeks ago. I didn't expect to still be going through all this stuff for 3 years but in those years I have also done tons of wonderful living. Acceptance is a powerful thing. I have low WBC right now - which scares me. But, as with my other scares I will keep marching ahead. Sad to hear of heart damage 6 years later. I pray you continue to feel well and live to be very old.

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