Slightly positive for ER

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Nettie1964
Nettie1964 Member Posts: 759

I would just like to know if there are any other ladies who are only slightly ER+ and if they were given hormone blockers.  My ER receptor was only 2%, but at the advice of my MO, I am on Aromasin.  It is starting to affect my quality of life and I'm considering stopping it. 

Just wondering if there are others and what there treatment plan included!

Comments

  • Nettie1964
    Nettie1964 Member Posts: 759
    edited February 2014

    Bumping in hopes that I'll get some replies!

    Thanks!

  • ruthbru
    ruthbru Member Posts: 57,235
    edited February 2014

    I was 11-25% ER positive so did Arimidex for 5 years. Someone said that being positive is like being 'a little bit pregnant', you are or you aren't; but for 2%.....I don't know. Hopefully someone in your same situation will come along and can give you more insight.

  • momof2doxies
    momof2doxies Member Posts: 342
    edited February 2014

    With my second primary tumor, I was 30%ER +. Then when the oncotype Dx was performed it was determined I was triple negative. I went through chemo, but no Arimidex for that tumor…negative is negative. However, my first tumor was 99% ER,PR+ so I am back on Arimedex for that tumor. I would get a second opinion. You have been treated as a TN, so I do not understand the Aromasin. 

  • Nettie1964
    Nettie1964 Member Posts: 759
    edited February 2014

    I did get a second opinion from MD Anderson, and the Dr. there agreed that even with 2%+, I would be safe to take the blocker!  I've often wondered if the doctor's get a kickback from the drug companies!  I guess I'm paranoid! 

  • christina1961
    christina1961 Member Posts: 736
    edited February 2014

    Netty,

    I'm on tamoxifen for 5-10% ER positivity, PR negative.  I don't like the side effects (weight gain, depression, fatigue) but I'm afraid not to take it.  I went to three oncologists for an opinion, two that are triple negative specialists (UNC and Vanderbilt).  My local oncologist and the UNC oncologist strongly recommend the tamoxifen to be followed by an AI. My local oncologist wants me on some type of anti-hormonal for 10 years.  The Vanderbilt oncologist said if I had side effects I could probably quit taking it.  I continue to take it just in case and because 2 out of 3 recommend it.

  • momof2doxies
    momof2doxies Member Posts: 342
    edited February 2014

    Makes me wonder what type of testing in the Oncotype Dx would flip my 30% pos ER to being negative. Would love to be considered ER+ instead of a TN. But I am on Arimidex anyway. I remember my MO saying that if my second tumor had been ER+ with oncotype, I would have to restart my 5 years on Arimidex. Whatever!!! Please, just get me through 1 year without another damn tumor. I have my last surgery tomorrow. Sorry for my language; just feel like venting. 

  • Nettie1964
    Nettie1964 Member Posts: 759
    edited February 2014

    From what I was told, there are studies that show anything 3% and above will benefit from hormone blocker, but me at 2%? I still wonder.

  • ruthbru
    ruthbru Member Posts: 57,235
    edited February 2014

    I am just brainstorming, but could you get in touch with the people who manufacture Aromasin? They might have some statistics.

  • Annie2012
    Annie2012 Member Posts: 32
    edited March 2014

    Nettie, I was told triple negative after my biopsy in Oct 2012, then after I did research online from John Hopkins and they recommend retesting, I pushed to have the tumor retested after chemo and bilateral mastectomy. My oncologist said markers don't change, but finally agreed to it and it came back 10% ER positive. I am on tamoxifen for 5 yrs now. Whether the 10% helps or not, I may never know, but feel I need to be on it just in case!

  • Nettie1964
    Nettie1964 Member Posts: 759
    edited March 2014

    Thanks Annie2012, I can understand at 10% but mine was only 2%.

  • sduch1
    sduch1 Member Posts: 104
    edited March 2014

    I am ER- and PR 5%+ and my dr at MGH is having me take Tamoxifen. She originally did not include it in my treatment plan and then added it in this past fall, a year out from treatment. She said that there are differing opinions on it but for any hormone + they are recommending take it. I am not even ER+.

  • theresa45
    theresa45 Member Posts: 314
    edited March 2014

    I just saw the following recent study on low estrogen levels.  It is at  http://www.practiceupdate.com/journalscan/8187.

    • In this retrospective analysis of almost 10,000 patients with
      primary breast cancer treated at a single institution, investigators
      examined the impact of estrogen-receptor (ER) status (< 1% vs 1%–9%
      vs ≥ 10%) on overall survival. At a median follow-up of 5 years,
      patients with < 1% or 1% to 9% ER staining did significantly worse
      compared with those with ≥ 10% ER positivity and did not significantly
      differ from each other.
    • Based on this analysis, ER status < 10% does not appear to
      predict for response to estrogen-targeted therapy. This raises the
      question of the efficacy of this therapy in this population.
  • Nettie1964
    Nettie1964 Member Posts: 759
    edited March 2014

    theresa45,

    Do you happen to know the date of this study?  I haven't had time to research it, but my doctor did tell me that originally they study showed that anything under 10% would not benefit from the therapy, but according to recent studies, that cut off is now at 3% and in my case, both my local dr and my dr. and MD Anderson thought that I should take the therapy!  But I myself still wonder if it's worth the side effects that I'm having!

    Thanks for the article and I will be doing more research!

  • HomeMom
    HomeMom Member Posts: 1,198
    edited April 2014

    My initial biopsy showed ER 97% + PR 95% + and HER2-

    My  lumpectomy showed a LCIS and A DCIS with ER PR and HER2 to be determined.  They didn't spread into the surrounding tissue and have been removed. No?

    I decided on a masectomy, now I'm just starting to wonder if I should take my perfectly "healthy" right breast  too. :(

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