Would like to hear from node POSITIVE survivors out there!

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PaminFL
PaminFL Member Posts: 231
edited June 2014 in IDC (Invasive Ductal Carcinoma)

I am just wondering how many node positive survivors there are out there.  I'd like to hear your stories of battling this beast and wheather you've had reoccurance or not.  If so, to where and how long after treatment did the reoccurance happen, and how did you know it had spread somewhere else?  Did you have any symptoms?  I'm almost at the end of my treatment and I'm getting really anxious and scared.  Once treatment ends, I think I'm always going to feel like the bomb is getting ready to drop.  How do you calm that fear?

Thanks!

Pam

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  • billiegirl
    billiegirl Member Posts: 85
    edited January 2009

    I had a L mast 10/04. 30 positive nodes. Chemo (dose dense 4 AC & 4 Taxol), Rads, then Herceptin x 1 year . Currently,Still NED. I did participate in Vaccine Trial offered by U of W in Seattle. The fear is always there, but this all seems to be such a CRAP shoot. Some Sisters with less aggressive Cancers fair poorly, while some - like me, have a poor prognosis but fair well. Not knowing the future can be scary but most of us BC sisters realize more than others that we need to appreciate everyday and take it as a gift. Any day could be our last, for many different reasons...but we can grow by bearing what ever comes our way to the best of our ability, be it a recurrence or something else. I was down right depressed when my treatments ended as I felt like I should be actively "doing something". That seems to be a fairly common and unaddressed issue for many of us. My depression & fear has discipated quite a bit with time.Yours will also. If you do have a recurrance, you will handle it.

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  • everyminute
    everyminute Member Posts: 1,805
    edited January 2009

    Check out the Stage III section - many node positive survivors there and the success stories thread (under inspirational stories section I think) 

    I personally have a friend who had 5 positive nodes 9 years ago - she is NED doing great and another who had 4 positive nodes 4 years ago and is doing great.  My friend's mom had positive nodes (dont know how many) and is 8 years out.

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  • MicheleS
    MicheleS Member Posts: 937
    edited January 2009

    There's a thread on the triple neg section of this forum regarding + node survivors.  The triple neg BC tends to be MORE agressive than ER+/PR+ cancer and yet there are lots of good stories in that thread.

    I hear ya on the fear of mets/recurrance.  That's my (current) greatest fear...

    {{hugs}}

    Michele

    PS.  The mastectomy bra fitter lady where I've been going for my chemo kit supplies/bra/other BC related stuff had 19 of 21 + nodes in 2004.  She's NED and such an inspiration.

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  • Lisa1964
    Lisa1964 Member Posts: 944
    edited January 2009

    Pam, have a frank talk with your docs.  Being triple positive and receiving herceptin puts you in a really good spot.  3 nodes are not that many.  Looks like you have two beautiful children to raise, you need to do that and not worry.  The treatment consumes us so much, we need to move on when that is over.  Keep in mind, we will be monitored and scanned regularly for the rest of our our lives so this stuff doesn't creep up on us.

    Lisa

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  • marejo
    marejo Member Posts: 1,356
    edited January 2009

    Dear Pam...........Smile

    I was diagnosed in June of 2005.  I am er/pr negative but her2 strong positive.  I had a 4.5 cm tumor in my right breast (IDC).  I had a right breast mastectomy in July of '05 and 2 sent. nodes removed.  One node did have a micromet (.085 cm) and my margins were clear.  I did 4 A/C + Taxol (in the adjuvent setting) and started herceptin with my taxol.  My 8 chemo's were given dose dense (every other week) and my year of herceptin was given every 3 weeks.

    I am currently a 3 1/2 year surgery and doing very well.  I pray the same for you "sister!"

    Love and Peace from God I pray for you,

    Mary Jo

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  • mumito
    mumito Member Posts: 4,562
    edited January 2009

    Pam

    Had chemo first then mast and am now in middle of rads.  I am thinking positive we are not going to get reaccurances.  Mind over matter.

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

    Yes the Stage III threads are full of suvivors...me being one.



    My tumor was fast growing and er/pr negative, it was large and ugly, because it grew fast, only hit 2 nodes. I benefitted from hercptin during my chemo , which is now standard , at the time had to convince my onc to do it...gathered info and studies from this site. I only wish I had known a little more about neoadjuvant, wasn't offered to me, so I would know wheteher my chem worked against it...

    Believing that I am OK has been my hardest struggle. I have yet to have a day without BC being in my thoughts...but most days I do feel I have dodged the recurrence bullet...as I am now a full 2 years past herceptin and thrre years from chemo.Still no sign of BC ..yahoo!!!

    About a year ago I started to plan my future again...bought in to retirement savings again and worried about day to day finances. For me, it took time...Getting back to thinking about a healthy future has helped me Move Beyond. So , plan something...a trip..your retirement...think about something happy you'd like to be doing down the road. Really believe that it is possible. Many people survive BC...WHY NOT YOU?

    Give it time...and hopefully you too, will be writing to some other newbie about your survivor story.



    I also took the advice of other Metsters....who strongly encouraged me to enjoy my NED time, to live..as when/if metsdo occur...all that extra worrying just wrecks your day to day living.



    Live , laugh, love...it makes the best of life!

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  • jude14
    jude14 Member Posts: 293
    edited January 2009

    Hi...I had no positive nodes but my  sister in law had 4 positive and she did lumpectomy, chemo and rads and is still going strong 26 years later.......

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  • everyminute
    everyminute Member Posts: 1,805
    edited January 2009

    Jude - kiss your sister in law for me! 

    I read an article the other day at the oncs office about a woman with 23 postive nodes over 20 years ago - yay!

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  • samedaynurseJan
    samedaynurseJan Member Posts: 192
    edited January 2009

    I had no positive nodes myself....but.....my cousin had 7 and she is now 14 years out, she had another primary occurence in the other breast and that is now 6 years out , a very good friend of ours passed away this week with her breast cancer BUT she was diagnosed in 1978 with 9/13 nodes.....was fine until four years ago when they discovered bone mets, bone mets responded to treatment for 2 years and finally the mets got out of control and she passed away....but that was 30 years post diagnosis and she didnt have the treatments available to her that we have now....both of these women serve as huge role models and help with my positive thinking.....we can and will survive this !!!!

    jan

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  • JudyO
    JudyO Member Posts: 225
    edited January 2009

    Thanks to all that post the good things...I know a 5+ out 11 years, a 8+ out 4 years and a 9+ out 12 years...Since this is in my small group of friends...many of us must be out there. I think we sometimes forget that even with many lymph nodes that chances are 50% or better...that means that many people do well and go on without this coming back...I think most of us think about the % that don't...we never should forget the positive...

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  • Brenda_R
    Brenda_R Member Posts: 509
    edited January 2009

    One positive node here. Intramammary. I'm 2 years out from dx, 7 months out from end of active treatment. So far so good.

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  • juniper
    juniper Member Posts: 110
    edited January 2009

    I'm a stage IV survivor - 18/18 nodes, primary tumor with a local recurrence, triple positive.

     I had abraxane/herceptin 12 weekly treatments followed by CEF (4 treatments over 12 weeks).  This was followed by radiation then arimidex and herceptin every three weeks.  I have been NED for 16 months.  I will be on herceptin for life!

     It is natural to be anxious that treatment is ending and it's normal to be fearful.  I wish I had some wisdom for you except that it gets easier with time.  I still have tough days, but overall my prognosis is pretty good considering a stage IV diagnosis.   I keep reminding myself of that.  I hope you can do the same.

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  • KerryMac
    KerryMac Member Posts: 3,529
    edited January 2009

    Still in the midst of chemo here, but SOOOOO inspired by these stories!

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  • suz41
    suz41 Member Posts: 33
    edited January 2009

    I am so glad that I stumbled onto this thread.  I can relate to all the fears we are currently living with.  I just finished herceptin in December and my chemo ended last March.  I had a bilateral mastectomy in October 2007 with one sentinel node removed that came back with micromets.  I did 4 rounds of dose dense AC followed by 12 taxol/herceptin and then continued on herceptin for a total of a year (every 3 weeks).  I truly feel that I have done everything I can to fight this awful disease, yet everytime I hear of a woman losing her fight I immediately start comparing her story with mine.  Logically I know that the treatment is much more advanced now than in earlier years but sometimes I still find myself waiting for the next hurdle.  I agree with all the sisters who say we have to find a way to move on.....life is worth living and I personally feel like I have a second chance to make every minute count.  Let's kick cancer's butt!!  ~Suze

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