Low ER positivity and Tamoxifen

Options
waytooanxiousmommy
waytooanxiousmommy Member Posts: 144
edited June 2018 in Triple-Negative Breast Cancer

The biopsy identified my ER as 10% and PR and HER2 were negative. After chemo and surgery I am completely triple negative and the residual cancer doesn't have any ER positivity at all. My oncologist is suggesting Tamoxifen but not too hell bent on my having it. Any other triple negatives having Tamoxifen? Wondering if the side affects and increased risk of endometrial cancer makes the lowered risk for hormone positive cancers worth it or not.

· Share on FacebookShare on Twitter

Comments

  • moth
    moth Member Posts: 4,800
    edited June 2018

    hey, my stats were exactly the same: biopsy 10%ER+ and then Oncotype said I'm TN. My team has been talking about this for months and apparently it will be discussed in a conference again soon. Right now my MO is leading to NO tamoxifen because he thinks the risk would outweigh the benefits. However, he also said he spent some time hashing it out with another MO who had the opposite opinion & after their discussion they both walked away doubting their own positions.

    I think if they leave it to me, I'm going to say no & rely on the lifestyle modifications - esp heavy exercise. I already have some adenomyois which to me means the scans are messy and hard to read and what if they miss endometrial cancer because of the other lesions...

    Keep us posted about your decision

    · Share on FacebookShare on Twitter
  • Egads007
    Egads007 Member Posts: 1,603
    edited June 2018

    I was originally dx as TN but was 15% ER+ after final surgery path. I’ve been on tamox for 4.5 years and about to be switched to an AL in December for another 5 years. I knew basically nothing before coming to these boards and followed my MO’s orders blindly. Like Moth, I plan on serious conversations before continuing on with anything. My low percentage, the fact that I ‘lift heavy’ in the gym most days of the week & eat very clean has me wondering if the ‘risk’ is worth it. I hate the catch-22 feeling, but am strongly considering giving 5 more years of meds a pass. This time i want to be convinced of the value

    · Share on FacebookShare on Twitter
  • klvans
    klvans Member Posts: 258
    edited June 2018

    I've always heard that the final pathology report i.e. the one following surgery is the most accurate because they have the entire tumor to sample from. My MO told me that low ER+ status is anything below 10% and preferably anything below 5%.

    · Share on FacebookShare on Twitter
  • moth
    moth Member Posts: 4,800
    edited June 2018

    My post op pathology report didn't even repeat the IDC hormone testing - it just refers back to the biopsy tests.
    They also found a bit of DCIS after surgery & did test that (even weaker ER+/PR- & HER2-).

    My MO is going to ask the pathologist to dig out the tumor and do a repeat test on the IDC but he doubts it will give us any clearer answers - probably will just again be a weak or very weak ER+ so are we really going to be farther ahead?

    My TN designation comes from Oncotype because I scored 6.0 and their cutoff is 6.5 (those aren't percentages - they're some scale they use) and nobody is clear whether it should be used to change my diagnosis or not.

    · Share on FacebookShare on Twitter
  • Egads007
    Egads007 Member Posts: 1,603
    edited June 2018

    Klvans - Interesting, my MO told me they considered anything below the 15% mark as ‘low status’ and why she put me on tamoxifen. She said I “squeaked by”. I guess I’ll be adding your info to my discussion list at my switch up appointment. I wonder if there is an actual standard...it seems (from what I read in the threads) it can vary quite a bit?
    · Share on FacebookShare on Twitter
  • klvans
    klvans Member Posts: 258
    edited June 2018

    My MO told me that the current standard of care is to discuss the possibility of anti hormone treatment with those below 10%, but not to automatically prescribe it. The standard of care was changed in the last few years as before that time below 10% did not receive anti hormones. Recent studies showed that low ER+ patients receive "some benefit" from anti hormone drugs. It's a vague result as the research doesn't pinpoint how much constitutes "some benefit". Yes, something to discuss with your Dr.

    · Share on FacebookShare on Twitter
  • VL22
    VL22 Member Posts: 851
    edited June 2018

    I’m on Tamoxifen because I also had a ER+ tumor. I took it without hesitation, never thinking I’d have issues, but I was wrong. Terrible hot flashes from the start. Now three months in I have skin tingling and numbness and some headaches. I put myself on a tamoxifen vacation - 1 week in and I feel better. Plan to take one more week off and try again. Of course I’m doing this without speaking to my MO. I feel they all tend to really minimize SEs and I do t feel the need to be put on a guilt trip

    · Share on FacebookShare on Twitter
  • moth
    moth Member Posts: 4,800
    edited June 2018

    VL - how strong is your ER?

    · Share on FacebookShare on Twitter
  • VL22
    VL22 Member Posts: 851
    edited June 2018

    For my ER+ tumor 100% . It was 7mm and grade 1

    · Share on FacebookShare on Twitter
  • klvans
    klvans Member Posts: 258
    edited June 2018

    VL I've heard switching brands can help. 100% you will get a lot of benefit from it.


    · Share on FacebookShare on Twitter
  • waytooanxiousmommy
    waytooanxiousmommy Member Posts: 144
    edited June 2018

    I am now leaning towards declining Tamoxifen. Doesn't seem to be worth it for me.

    · Share on FacebookShare on Twitter

Categories