HER2/neu-Dx-2005

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maryannecb
maryannecb Member Posts: 1,453
HER2/neu-Dx-2005

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  • maryannecb
    maryannecb Member Posts: 1,453
    edited February 2008

    This thread is for those of us diagnosed in 2005. I know some will have relapsed or progressed and many hopefully are still NED. Share your story, concerns and any thoughts as we approach our third year in this journey.

    For me, although I am outwardly fully back into all aspects of my work and personal life, this year has been difficult. My mind wanders between accepting that I may be cured to worrying that tomorrow or the next day I may wake up and know "it "is back. I try to keep busy and that seems to work for me.

    My hair is back, my body is more or less back but my head...is stressed.

  • Annaanne
    Annaanne Member Posts: 190
    edited February 2008

    Hi Maryanne:
    Sorry you are feeling stressed.  I think the phases come and go.

    I'm also a stage 3er, dx Apr 05.  Actually, you were just being dx when I discovered this site.

    I'm NED (I have a checkup on Wed, so I write that with a little intake of breath.)  I feel back in my life quite fully, enough to sweat the small stuff again (you think I'd have learned!) Physically, I've also gotten back to where I was -- after much work and patience.  

    Even so, this will always be with us, won't it.  I actually accompanied a friend to her treatment this week, and left with a big old stomach ache.  

    I hope the preoccupation passes for you.  Or you may need to stop and grieve for the person you were before all this happened.  And it's ok to have these times when we acknowledge what we faced and how hard it's been.  Isn't it?

    Love 

    Annaanne 

  • Chelee
    Chelee Member Posts: 513
    edited February 2008

    MaryAnne,  I was DX in 12-20-05 & had MRM on 1-3-06.  So I'm a touch over two yrs out and I'm finally feeling pretty much back to normal which worries me at times.  I have many more good days now then bad...but then I have those days where I look in the mirror and think how quickly my world can be turned upside down again.  I hate when those fears come creepying in. 

    Its so nice to have my hair down to my shoulders again. It took so long to get it this way and unfortunetly I know from personal experience how fast that can change.  I pretty much think positive but with ever little pain or ache comes that "ut oh" feeling comes to mind.  I still have that cancer cloud that hangs over my head but its not as bad as it use to be.  But to be honest I hate that its even there!  I take nothing for granted and appreciate each and every day God blesses me with.  BC has stole enough from me so I refuse to let it take anything extra if I can help it. 

    I felt so happy to hit my two yr milestone with this her2 cancer...but I just hate the not knowing what tomorrow might bring.  I try to live a little bit in denial at times as we can't change a thing by worrying.  

    Its thanks to the women I've met on these boards that made me realize I can make it.  Now that I've made it the two years I just continue to pray I make the third yr too.  I'm so positive at times...and other times I a get a bit down.  It comes and goes.  But it is nice to read these boards and see other women that ARE NED after years and doing well.   Those women keep me going and help me to think positive.  One gal on the Her2 board had her oncologist actually say the "cure" word to her.  She had her2/neu with 7 or so positive nodes and has been cancer free for 6 years.  She was taken back when her onc told her she thinks she is done with all the bc stuff.  I want to be like her.  So I will continue doing what I can to keep IT away...and think positive.  (But it sure isn't easy at times.)

    Chelee

  • lexi4
    lexi4 Member Posts: 1,074
    edited February 2008

    Hey MaryAnne,

    Here I am! Diagnosed in 8/05, with stage IIIb bc. I have been done with all txs since Nov 06.

    I  have moved on in most ways. I am still reminded daily of my battle with this sucky disease. I have my moments when I feel like I have been totally healed from this disease and that it WON'T come back. Then I have times when I feel like I have made it past the 2 year mark, now I am just that much closer to recurring. Does that make sense? Goofy, I can't stand that part of the new normal.

    Life is very good and I am happy and feel pretty healthy right now. I suppose I shouldn't ask for more. I am very grateful for all of you who helped me get through. You all are so priceless.

    Lexi

  • prayer
    prayer Member Posts: 77
    edited February 2008

    Yup....my mind wanders as well. 

    I was diagnosed in April of 05 and had surgery in june. So far so good. 

    I read all the info about TC being better than AC and of course, I was given AC and a year of herceptin, so I worry that I did not get the right treatment.  

    At least I got the herceptin, as that was up in the air to given the tumor was 7mm.

    This has been a hard year for me to.  The mind plays tricks for sure.

  • maryannecb
    maryannecb Member Posts: 1,453
    edited February 2008

    Good to see you "old-timers" checking in.

    I really didn't appreciate how this diagnosis would tag along even after I had resumed my life. But it does seem to be affecting us all at times.

    Good news for me today, CT head-clear, bone scan-NED. How good is that. I feel fortunate to be here and well...really I do.

  • Maire67
    Maire67 Member Posts: 768
    edited July 2010
  • lkc
    lkc Member Posts: 1,203
    edited February 2008

    Hey Maryanne,

    I was dxed a bit before you at stage IIIC May 05.

    I am going strong and feeling good most days.

    I do go to " the dark side" occasionally and let it ride.

    I think its natural as we all have abit of post traumatic stress/

    chemo, radiation, BC crap  syndrome.

    Take care maryanne, I hope you are feeling better!

  • Annaanne
    Annaanne Member Posts: 190
    edited February 2008

    Well gals, just ahad my check up and all is well!  In fact, my doc just switched me from every 3 months to every 6 months!!!  And she still says not one of her stage 1-3 her+ patients who had herceptin has recurred.  Feel like a miracle...

    Annaanne 

  • mikeysmom
    mikeysmom Member Posts: 137
    edited February 2008

    Annaanne, congratulations on your great check up! And thank you for posting what your onc said about her stage 1-3 her+ patients. That just made my day!

    Cyndi

  • NootiesMom
    NootiesMom Member Posts: 39
    edited February 2008

    Hi 05's

    I was dx in april 05, had all the chemo and herceptin and rads, stage 2b, no lymphs.  Have not had any scans done, so not sure I'm ned, praying I am.  NO se's life resumed as normal.  Mind does play nasty tricks and i worry about recurrance, choose not to take the AI's, had a full hysterectomy, so just letting god guide my way!!!!!!!

    Randi

  • staythecourse
    staythecourse Member Posts: 3
    edited February 2008

    Annenne   That is good news.  Were you ER+PR+ and Her2+ ?  did you have chemo and radiation followed by Herceptin

  • Annaanne
    Annaanne Member Posts: 190
    edited February 2008

    Hi Stay. 

    I'm er/pre neg.  Strongly her pos.  Large tumor and one pos node after neo adjuvant chemo.  9/9.  Ki67 of 90% (that means growth rate off the chart.) 

    I had a/c, taxotere plus herceptin (not dd), continued herceptin for one year and rads (including rads to the super clavs).  

    All my "prognostic indicators" were "poor".  And I'm fine!!!

    Also -- when my onc said that not one of her herceptin gals had relapsed -- to put that in perspective...she doesn't have a huge # of her2 patients, since she's a general onc, but she started giving herceptin off label 8 years ago.  So some of her patients are recurrance free for 8 years! 

    Annaanne 

  • maryannecb
    maryannecb Member Posts: 1,453
    edited March 2008

    i am recovering from my latest anxieties.

    Just to prove my optimism I bought my RRSP yesterday...Canadian retirement savings...and I PLAN to spend them some day. LOL.

    Thanks for the posts, ladies.

  • Fitztwins
    Fitztwins Member Posts: 7,969
    edited March 2008

    Hey there!! do I count? 12/04?

    I am still Ned as far as I know. I hurt (muscle/joint) which I contribute some of it to my reconstruction, weight, menapause. If I do yoga and take Alieve, I feel better.

    Yes the fear is still there. Hearing about Alaska Deb spinned me a bit.

    But, I am living...man am I living! probably too much for my DH (ie. shopping).

    I hope that whatever happens, tykerb and herceptin will have my back.

    Janis

    Fists up sister!

  • maryannecb
    maryannecb Member Posts: 1,453
    edited March 2008

    Course you count Janice. Alaskadebs news shook me too.

  • florencedonna
    florencedonna Member Posts: 131
    edited March 2008

    Diagonosed 10/10/2005, finished herceptin 1/2007.  Stage III.  I was walking down the hall at work about a month ago when I had this sudden profound feeling that it was possible that I was cured of cancer.  Not that I was cured but that it was possible.  I hadn't realized how on some level I was carrying around the weight of cancer even if I wasn't aware of it.

    Donna

  • marejo
    marejo Member Posts: 1,356
    edited March 2008

    Hi Maryanne,

    I hear you.  Definitely do.  I, like you, think I am cured.  I thank God often for healing me and then I think - well what if I'm not.  Why would I be cured?  Why me?  And on and on it goes. 

    I was dx in June of 05.  Stage 2B- one sent. node had one microscopic cell .085  Right breast mastectomy.  Did 4 A/C dose dense - 4 taxol along with herceptin for 1 year.  Also, 28 rads and then had left breast removed prophylactically.

    Feel very healthy - I take good care of myself for the most part - exercise - eat healthy (for the most part) - take a few supplements -and will admit the journey is getting easier and easier.  I trust a bit more and more each day that I just "might" be healed.  Hehe!  I'm even planning on DIEP reconstruction for June.  My 3 year cancerversary present - 2 new boobies.

    Thanks for bringing this up - it's interesting to read how we all feel.

    God's Peace to all..........

    Mary Jo - 2 year 7 month survivor NED - but hey who's counting.

  • bluecoral
    bluecoral Member Posts: 1
    edited March 2008

    HI

    I am new to this so please bear with me. My 53 yr old sister has invasive ductal. Already had single mastectomy with reconstruction simultaneously.  Preliminary path says -estrogen/+ progesterone and HER2 pos 7.

    Has anyone had any readings like this? Still waiting for Oncotype.

    What docs are you seeing and where? What treatment?

    Thanks

    Sherri

  • maryannecb
    maryannecb Member Posts: 1,453
    edited March 2008

    Hi Bluecoral,

    this site is good for all kinds of info. the women here are from all over the world. The treatments for BC depend on the tumor markers, lymph node status,type of cancer, stage and size of the tumor. treatments are designed to lessen the chance that the BC will come back.

    You should post this question on it's own and you will get more replies. Try it out on the Just Diagnosed thread.

    Good luck with your sister.

  • Margerie
    Margerie Member Posts: 526
    edited March 2008

    Maryanne-

    Diagnosed 10/05 stage 3 also.  I have continued to be NED and I am firmly in recurrence denial at all times!!  I figure I worried so much about it for the first 2 years that I just am not going to anymore.  I just had my first 3 month visit with onc and I asked if it hasn't come back by now, what are the chances it will? He said simply "I don't think it's coming back Marge."  Anyway, I know no one knows the answer.  I just keep on going to my appointments and that is all I am going to give cancer these days. Better days for all of us- here, here.  And my thoughts are with the ladies still fighting- cancer is a b%$#*.

  • maryannecb
    maryannecb Member Posts: 1,453
    edited March 2008

    Good job on the"firm denial" Margerie. But you are right...surely we would have recurred by now....I am going with that for now too.

  • mimi1030
    mimi1030 Member Posts: 700
    edited March 2008

    My mom was dx Aug 04 (so not quite 2005) with Stage 1 DCIS with .5mm IDC, Her2+, mastectomy, chemo, clear margins, negative nodes.  We lived like the doc said, less than 3% chance of it reoccuring....3 years NED, all scans clear until Sept 07 she was dx with mets to liver and bones.  She is fighting again.  Doing a good job too...she is almost NED again after only 4 months.

  • Annaanne
    Annaanne Member Posts: 190
    edited March 2008

    Mimi:
    I'm so sorry to hear that your mom recurred...so against the odds.  Now I'm sure she's on herceptin, which should keep her NED for some time.

    Take care of her

    Annaanne 

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