Triple Positive and Tamoxifen after 5 years...??

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melster
melster Member Posts: 96
edited September 2019 in HER2+ (Positive) Breast Cancer

Hi all! I am about to hit my 5 year mark for Tamoxifen. I had Triple Positive Stage 2A, 6 months of chemo, 6 more months of Herceptin as well as a BMX with DIEP. The first week of May will be 5 years of Tamoxifen. (I am now 40 years old..have not had a period since October 2011).

What are you guys doing with regard to staying on it another 5 years or stopping? My doctor is giving me the results of the BCI--Breast Cancer Index test at my June appointment.

I am just looking for feedback from you guys as to what the current trends are with us Triple Positive ladies!
Thanks!

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  • rozem
    rozem Member Posts: 1,375
    edited April 2017

    hi

    I was advised to stay on hormone therapy for another 5 -preferably an AI but I had a tough time on it and I would have to stay on zoladex shots as I'm not menopausal yet. So I will stay on tam and move to an AI if these ovaries ever stop working

    Curious about your BCI test. Please report back

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  • hlya
    hlya Member Posts: 484
    edited April 2017

    My friend got HER2 positive, 2 nodes involved. She had been on Tam for 5 years, and her doctor put her on another 5 years but she stopped after taking for a while. It's been 8 years since she was 1st dx, and she's been doing very well.

    (She said she felt the medication was doing more harm to her body than benefit.

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  • melster
    melster Member Posts: 96
    edited May 2017

    Rozem---

    I called to get my results today as I couldn't wait until June. They said I fall into the "high likelihood of benefit" category and my "BCI Score" was a 7.1. Yay me. Ha! I will discuss with my ONC in June, but looks like it's another 5 years for me.

    waaaaaaaaaaaaaaaaaaaaaaaah.

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  • rozem
    rozem Member Posts: 1,375
    edited May 2017

    thank you for reporting back! Interesting for sure. So I guess the ER part of our risk of recurrence is the same as her neg women (in that the risk remain years out and hence the extended hormone therapy benefits)

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  • orange1
    orange1 Member Posts: 930
    edited May 2017

    Based on ATLAS trial results, I am doing an additional 5 years of tamox. I aleady completed my first 5 in 2013. I may go even longer since I don't have significant side effects from tamox. I am post menopausal, so could take an AI, but I don't want to deal with side effects from complete loss of estrogen.

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  • rozem
    rozem Member Posts: 1,375
    edited May 2017

    orange1 - thank you for posting, I remember you from when I first started posting as you are her2 aswell

    thanks for the update has your onc recommended?

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  • Nunci
    Nunci Member Posts: 18
    edited September 2017

    Hi ladies!   I am triple positive and 4 years out in November.  I was 33 when diagnosed. I started tamoxifen July 2014, so just over 3 years.  I have horrible side effects from tamoxifen.  Thinning hair, brain fog, brown patches on face, painful vagina issues (irritated, raw, dry, feel like I have paper cuts), I have to go to OBGYN almost every other month just to see if anything else is wrong - but no it's side effects of tamoxifen.  I had no node, size just slightly below 2 cm tumor, DMX, 6 rounds of chemo, Herceptin for a year.   I'm scared to not take it, but I don't want to take either. I actually made up my mind this past week to stop taking it -   :( 

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  • rozem
    rozem Member Posts: 1,375
    edited February 2018

    hi all

    I started this thread last year and lo and behold I am having some issue on tamoxifen in year 6. I had an episode of spotting - I have had uterine thickening almost the entire time on tam but not spotting. I also had a biopsy done and it was negative. I am schedule for a D&C and another biopsy 1st week of march. My days on tam may be numbered ....

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  • Shanary
    Shanary Member Posts: 2
    edited February 2019

    Did

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  • windgirl
    windgirl Member Posts: 340
    edited September 2019

    I posted about this same question couple of weeks ago. My main doctor says to stop it at 5, and that the study that recommends the 10 years was not based on triple positives. Others have said if you don’t have bad side effects, why not continue. I am about 4.5 years in, and am undecided as well.

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  • Margun
    Margun Member Posts: 419
    edited September 2019

    WindGirl- I think the type of the hormone pill and how long you have to take it depends on the age of the persons, if she is premenopausal or postmenopausal as well as how much hormon positive she is. I guess their you are postmenopausal perhaps your doc agrees with 5 years only .

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