Question for us ER pos. Gals??????

faithfulheart
faithfulheart Member Posts: 544
edited June 2014 in Stage III Breast Cancer

hey girls,

this is a wierd question, I  really don't know why I thought of it.  here it goes.......... Do you think hercepten is a better or a equal defense against the beast as tamox or an AI for us ER pos women??  I know her 2 cancers tend to be more agressive.  Although mine was pretty dang beasty!!!!  I just feel like we are protected as long as we stay on the hormonal blockers, then it's open season on are bodie's again. Where as I have triple neg sisters, and her2 nu sisters that get past the 5 year mark and dr.'s have considered them cured, oh so they have told them. However, I feel like because us er gals are est. driven, even if we are post meno, our bodie's will find away to make that est. I guess, it just made me a little nervous last time I saw the onc. he said, I am going to keep you on hormonal blockers for 10 years!!  Hopefully more he added, then looked at me and said, but ten years is a really long time! ! What?????????  Does that put me back in the unsafe zone............ I am just havin a day,  I guess I need some reasurrance today, feeling a little vulnerable, which is really not me, anymore that is.................

Anyone have any imput,  thanks for letting me vent, you would think, I would be to busy to think about this, and I am, but for some reason it got to me today!!!!!!!!!!

Love to all!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Steph

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Comments

  • Racy
    Racy Member Posts: 2,651
    edited December 2011

    From what I have seen on these boards, recurrence can happen even decades later. I have only been on Femara for four months but am thinking I hope I can stay on it forever.

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  • LouLou40
    LouLou40 Member Posts: 180
    edited December 2011

    I'm triple positive was post menopausal from chemo and went onto an AI post chemo, I had to stop due to osteoporosis after one year, my Onc was happy for me not to take any hormone therapy as he thought herceptin and chemo did the most good and hormone therapy only reduced my risk by 2 %, my blood estrogen was very low when measured.

    My period returned 8 months ago, still not taking any hormone therapy as Onc believes if your her2 pos then the greatest risk of recurrence is in the first 2 - 3 years and I'm nearly 3 yrs in feb 12, if I didn't have osteo he would recommend zoladex and an AI for a couple of years but thinks building up my BMD is Greater priority need at 42 than the low risk of recurrence from my BC. He is a very well respected Onc and I do trust his decisions - I also had skin involvement which technically puts me at stage 3

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited December 2011

    faithfulheart and racy - I have only been on Femara since August and am still receiving Herceptin until Feb of '12 - being triple positive scares the beejesus out of me - the double whammy of the estrogen problem with the aggressiveness of the Her2.  I would gladly stay on Femara as long as I can since the Herceptin will be ending!

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  • faithfulheart
    faithfulheart Member Posts: 544
    edited December 2011

    I guess, we just throw what we can at it and pray alot!!!! I hope  I did not offend anyone in anyway,

    we are all in this together!!!!  It's just so complicated this bc thing sometimes you know????

    I am grateful for all we have, I do thank God for that white pill everyday I take it ! I also thank God for the hercepten for all the her pos as well. I really am not sure what my point of posting this was today, I think I just was having a small panic attack! ! I have not had one in a while, I guess I was over due!!!!!!!!!  Just wondering what girls that were ER pos felt on the subject ...............

    Thanks girls

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  • caaclark
    caaclark Member Posts: 936
    edited December 2011

    I don't know the answer but I live in fear of the day my oncologists tell me to stop taking Femara. 

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  • Racy
    Racy Member Posts: 2,651
    edited December 2011

    faithfulheart, we understand as we all have those days. I agree with praying, including praying for a cure. If I could have one wish granted, that is what it would be.

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  • SharonMH
    SharonMH Member Posts: 353
    edited December 2011

    Hi faithheart, I hope that I am doing the right thing. My onc has me taking Femara. I think we all have those days when we are worried.. If I remember you live just up the way from me. I would love to get together with your group for lunch or ?  SharonH

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  • karen1956
    karen1956 Member Posts: 6,503
    edited December 2011

    Steph....Herception only works for Her2+ gals....for ER+ there is tamox or the AI's....I endured AI's for 3 1/2 years then quit....its 21 months since my last Aromasin....I'm 5 years 10 months from Dx......

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  • faithfulheart
    faithfulheart Member Posts: 544
    edited December 2011

    Sharon, did we exchange #, please pm me or I will you, We would love to have you join us! ! we do all kinds of stuff,  we don't focus on the bc, but if someone needs to vent go at it, your in a safe place............. We have done everything from strolling roger's gardens to happy hour at the chart house, coffee in the harbor, walks ect.. the good thing for you is, we still are all getting to know each other and new people join all the time. Most of us are stage 3, but, we are all sister's and stage does not matter, there is a common thread there though.Lets make this happen, love to finally meet you sweeti!!!!!

    xoxo

    steph

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  • jennyboog
    jennyboog Member Posts: 1,322
    edited December 2011

    We al have those days...I have no input on the Her2 but I'm in the same boat....Aromasin at least 10 yrs or indef. if I can tolerate it. 

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  • MaxineO
    MaxineO Member Posts: 555
    edited December 2011

    I am grateful to have hormone blockers for the next 10 years. And when I expressed panic that that would be all (I will be only 49 in 10 years, doc!), my doctor reminded me that A LOT can happen in research in 10 years...there may be new options.

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  • Ellie1959
    Ellie1959 Member Posts: 316
    edited December 2011

    Karen1959 - I'm with you - I might have made it 3.5 years all together on AI's but it was hard. I'm hoping the chemo and radiation did the trick and I can stay off them. But if I have a recurrence it is a whole different ball game. I am grateful that they are available for the women who can tolerate them - but quality of life is important to me and it was compromised while I was on them - take care all - Ellie

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  • karen1956
    karen1956 Member Posts: 6,503
    edited December 2011

    Ellie....My onc would have loved me to stay on them the whole 5 years or even 10...as he says, his job is to keep me cancer free....I told him my job is to look at my "whole" life...quality of life...he has been supportive of my decision...after a 2 month break walked into the exam room, he knew before I even said anything that I wasn't going back on them....he did say, I gave it my all.....I tried all 3 AI's and even tamox.....one was worse than the other......at my last appt, I asked him, if I would try them again, how long and he said 5 years....I just say no thanks!!!! Onc kept me on 3 month schedule till I hit 5 years last Feb, and now I'm on 6 month intervals....I go back in Feb.....In my heart I know I did everything I could in regards to Tx to beat the beast....bilat, chemo, rads, ooph and 3 1/2 years of AI's....There is no guaranees....If G-d forbid, the beast comes back I will deal with it....BUT if I con't on the AI's and it came back, I would have been as angry as angry could be!!!!  So its one day at a time.....and hers to all of us dancing with NED for years to come!!!

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  • TectonicShift
    TectonicShift Member Posts: 752
    edited March 2013

    My understanding is that risk of recurrence only goes down for ER-PR- BC. For hormone receptive BC it never goes down. I haven't even had chemo yet but I hope to stay on hormonal therapies forever - and I hope they work.

    http://www.medpagetoday.com/HematologyOncology/BreastCancer/8677 

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  • pupmom
    pupmom Member Posts: 5,068
    edited December 2011

    I haven't started hormonals, but I too, want to stay on them forever! They seem to be the primary guards on the wall.

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  • Ellie1959
    Ellie1959 Member Posts: 316
    edited December 2011

    I read the article and I still don't understand (blonde to the bone) - do AI's fight recurrence in ER+ ? Sorry if I seem dense - Thanks

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited December 2011

    Ellie1959 - yes, aromotase inhibitors suppress estrogen for those of us who are ER+ and post-menopausal.  Tamoxifen blocks (but does not suppress) estrogen for those who are ER+ but pre-menopausal. 

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  • faithfulheart
    faithfulheart Member Posts: 544
    edited December 2011

    Does anyones feet or legs hurt on tamox?  I had an ooph, and the doc put me on tamox in sept of 2010.  Even though I am officially post meno at 43,  he started me on tamox first. I guess I can stay on the blockers longer if he starts with tamox then switches me to  an AI. A year out though and yes I have been on my feet alot but, the pain is really bad, can anyone relate?????

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  • Ellie1959
    Ellie1959 Member Posts: 316
    edited December 2011

    I totally relate - I was achey all of the time. And the AI's I tried really made my hands hurt. I was 46 and pre-menopausal when I got dxed - What do you take for pain? Ellie

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  • faithfulheart
    faithfulheart Member Posts: 544
    edited December 2011

    Ellie, I don't know what to take!! percecet would help the most, but then how do I do that, and drive 2 kids around all day!!!!! What did you take???

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