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Looking for Her2 Positive survivor stories

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  • fightergirl711
    fightergirl711 Member Posts: 190
    edited August 2016
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    Thank you for posting!!

  • NicNak
    NicNak Member Posts: 24
    edited August 2016
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    I am not NED, but I am still here! 3 years and 8 months since original diagnosis.

  • lago
    lago Member Posts: 11,653
    edited August 2016
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    NicNak congratulations! Remember this thread said survivors not NED. Metavivors should be posting here too.

  • MsBrompton
    MsBrompton Member Posts: 324
    edited August 2016
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    Recently celebrated my 1-year cancerversary. I've been taking a lot of comfort from this forum while going through treatment. Now finished herceptin, NED and looking to the long term future. Thanks to all who take the trouble to come back here years after putting cancer behind you and post messages to the newbies (who as you know are scared).

  • Cwhitney
    Cwhitney Member Posts: 42
    edited August 2016
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    MsBrompton, awesome news! Congrats on 1 year!

  • kdtheatre
    kdtheatre Member Posts: 145
    edited August 2016
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    I just recently learned that the receptor scores from my biopsy (ER/PR+, Her2-) was correct for one of my masses, but not the 2nd one. After my lx surgery - the path report says I am now Her2+, I guess this is called Triple Positive. I don't know why - but this scares me horribly. I was doing really well prior to all this - but then when it changed, and my surgeon sounded SO incredibly sad to tell me the news...I knew it must not be good. I am still trying to learn more about it, but am so anxious/panicked it is hard to read stuff. I have xanax, but am trying not to take it every night.

    Reading the survivor stories has helped - but I am still terrified. Hope my apt with my MO tomorrow will relieve some of this.

  • Cwhitney
    Cwhitney Member Posts: 42
    edited August 2016
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    kdtheathe, I too am triple positive and freaked out like you did. I went from having dcis to idc then getting all my tests back and being Her2. That was probably the worst point of this journey. My breast surgeon acted the same way only because it meant a year of treatment instead of just my mastectomy and tamoxifen. But believe that we are very lucky that we have amazing drugs like herceptin and Pergeta in our arsenal. They are wonder drugs. And chemo is not as scary as I thought. You will get through this. I have many triple positive friends that are doing just fine years out from their diagnosis. They are living life and looking gorgeous!

  • MsBrompton
    MsBrompton Member Posts: 324
    edited August 2016
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    kdtheatre, triple positive is a GOOD one to be! The worst is triple negative!!

    HER+ used to be bad news before Herceptin but now it's no worse than being HER- if you take Herceptin. As my onco said, "I've got something to treat". ER+ is good because taking things like Tamoxifen suppresses the growth. PR+ doesn't seem to mean much.

    Hang in there.

  • lala1
    lala1 Member Posts: 974
    edited August 2016
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    kdtheatre---My friend was diagnosed with HER+ BC back in March. She did neoadjuvant chemo with Herceptin...6 doses at 3 weeks apart. She was very very frightened by this diagnosis. It's the opposite of mine and I didn't have to do chemo or rads so I couldn't really help her too much, just emotional support and I researched as much as I could. Her lump was fairly large so the goal was to shrink it enough to try a lumpectomy. She had that surgery 2 weeks ago and called me Friday to tell me that pathology showed a complete pathological response! The surgeon said he couldn't tell the lump from healthy tissue during surgery and pathology showed the same! Needless to say she's ecstatic so I just want you to know this is totally possible for you as well. And much of my research showed better long term outcomes for HER+ women over HER- women because of Herceptin. The chance of recurrence is slightly higher in the first couple of years but you will be followed so closely, it would get caught early. Then after that your recurrence risk drops a lot. My friend went into this thinking she would not live to see her son grow up but we are at 6 months out and even though she's about to start rads, she is very very optimistic. She planned to "burn the farm" with a double mastectomy and ended up being totally ok with lumpectomy which got clean margins and negative nodes in the first go round. I know it's scary but know that HER+ women have great outcomes these days. Stay on the boards where you'll get the best support possible and know you're way tougher than you ever thought!

  • lago
    lago Member Posts: 11,653
    edited August 2016
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    kdtheatre this Wednesday I will be celebrating 6 years NED (no evidence of disease). As you can see I was diagnosed triple positive, stage IIB with a rather larger tumor. I'm doing just fine. I too was scared as shit when I read about HER2+ but now they have so many ways to battle this. I did Herceptin and chemo. But now if your tumor is big enough they are giving Perjeta before surgery. I didn't get that but obviously I didn't need it because I'm still cancer free!

  • Lilyn
    Lilyn Member Posts: 156
    edited August 2016
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    Eight years out nowHappy Hugs and strength to all



  • NWArtLady
    NWArtLady Member Posts: 239
    edited September 2016
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    5 years NED! Never thought I'd see this day. So thankful. Hang in there, everyone!!

  • lexi4
    lexi4 Member Posts: 59
    edited September 2016
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    11 years NED, as of last month. So grateful for my team of dr.s as well as herceptin!

    I had a pretty gloomy prognosis but my team of oncs always gave me hope.

    Big hugs and prayers for my her2 sisters!

    Lexi

  • fightergirl711
    fightergirl711 Member Posts: 190
    edited September 2016
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    I love seeing these stories thank you

  • CassieCat
    CassieCat Member Posts: 863
    edited September 2016
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    Keep the good news coming! So great to read the updates.

  • zjrosenthal
    zjrosenthal Member Posts: 1,541
    edited September 2016
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    Just had my second ned mamo and sono this summer. All is looking good and I am beyond grateful. Treatment isn't easy but i am 73 yrs old ladies and if I got through this you can too. Love, Jean

  • Cwhitney
    Cwhitney Member Posts: 42
    edited September 2016
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    These stories give us all hope! Thank you for sharing!

  • AliceS
    AliceS Member Posts: 74
    edited September 2016
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    So thrilled for you, Lexi and you've made my day besides--lots of life out there to live! Am always looking for Stage 3 -er-pr success stories so it was fabulous to wake up this morning and find yours! Yes, thanks to Herceptin-- a real game changer and now there is Perjeta if needed. Do you watch your diet? Best wishes to you and keep posting--makes us all happy.

    Stephanie

  • Deaconlady
    Deaconlady Member Posts: 86
    edited September 2016
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    So encouraging to read these! 💜 I had a follow-up mammogram last month on my right side that was clear!

  • AliceS
    AliceS Member Posts: 74
    edited September 2016
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    NicNak--thanks for posting! Thank goodness for Perjeta--came just in time! I have a friend who has the same diagnosis as you (and-er-pr), and doing great since 2009. Keep a healthy lifestyle--exercise and everything in moderation.

    Stephanie

  • Pipandor
    Pipandor Member Posts: 130
    edited September 2016
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    Thank you so much Lexi4! Your post is of great comfort for us HER2+ -er/-pr.

  • Sr2295
    Sr2295 Member Posts: 22
    edited September 2016
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    congratulations on one year! As a newbie to the forums and starting chemo and targeted therapies on Tuesday these posts are really amazing!!!!


  • lkc
    lkc Member Posts: 180
    edited September 2016
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    just back from my Routine Onc visit; all's well and blessedly healthy , this after a really dismal stageIIIC , her 2 pos , 12 pos nodes, and no clear surg margins, ( only one of my family to suvive this beast) 11 .5 yrs ago., and all the negative statistics (back then.

    There is so much hope and great LIFE after this crap

    Wish you all a gentle road that no one wants to travel onimage

  • specialk
    specialk Member Posts: 9,227
    edited September 2016
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    lkc - great pic, and congrats!

  • fightergirl711
    fightergirl711 Member Posts: 190
    edited September 2016
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    Love the photo lkc, you look wonderful! Congrats, and it always makes me smile to see you post, it gives hope to us who are still in the thick of things. :)

  • KateB79
    KateB79 Member Posts: 555
    edited September 2016
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    lkc, thank you for that! What a lovely picture!

    I just saw my RO for my six-month check-up.

    Still NED. Diagnosed July, 2015.

  • Elaine422
    Elaine422 Member Posts: 6
    edited September 2016
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    What's NED?

  • Elaine422
    Elaine422 Member Posts: 6
    edited September 2016
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    Do you know where a thread is on your first mammogram after finishing treatment? I'm a little scared. I'd like to know what others were feeling. Thank you. I am going to my support group tomorrow, so I'll ask them as well.


    I don't have all my specifics in front of me, but I do know I'm HER-2+. Had chemo, lumpectomy, chemo again, radiation and now on Herceptin until November of this year.

  • zjrosenthal
    zjrosenthal Member Posts: 1,541
    edited September 2016
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    No Evidence of Disease.... Love, Jean

  • mktoc92315
    mktoc92315 Member Posts: 13
    edited September 2016
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    No evidence of disease.