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Mildly ER+ TNBC and Tamoxifen

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landoneducation View Drop Down
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    Posted: Dec 27 2018 at 3:35pm
I am a new member and this is my first post. I am interested in hearing from women who despite being functionally TNBC, are mildly ER+ (PR-, HER2-).  My tumor (lumpectomy, no node involvement) was 1.7 cm, stage 1b, 19% ER+ weakly staining, PR-, HER2-, grade 3.  I was treated as TNBC and did TC (4 doses every 3 weeks) and whole breast radiation with boost.  I thought I was done, but both of my oncologists wanted to talk Tamoxifen.  I am 50 by the way and post-menopausal. Diagnosed at 49.

Both oncologists, TNBC specialists, report that they cannot quantify the benefit , if any- maybe 3%, maybe 5% - and both are ambivalent as to whether or not I take it, but say it could potentially have some minimal benefit and it's fine if I want to 'throw everything at it'.  I'm not a fan of taking drugs and I believe that maximizing my health and vitality is the best way to prevent recurrence, which could be partially compromised by taking Tamoxifen.

I am struggling with the decision. Are there any others out there who have a similar tumor biology and faced the same decision?  I am interested in hearing whether you took Tam or decided against it.  I would especially love to know of someone who is a few years out without recurrence who chose not to take it.  Grabbing at straws, perhaps, but I am eager to find others who are in this gray area.  I suspect there are a lot of us (relatively speaking) out there.

Thank you!
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kjzack View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote kjzack Quote  Post ReplyReply Direct Link To This Post Posted: Dec 27 2018 at 5:51pm
I am in the same boat, Er+ 16% in one of two tumors, other and lymph node all tnbc, so I had chemo and bmx; I am 54.  I am starting radiation next month and then my oncologist wants me to do 5 years of tamoxifen.. Iím thinking I will try it and if the side effects are too bad I will stop, since the benefit is somewhat questionable.  Itís a hard decision, but some people have very few side effects, so I figure itís worth trying.

Good luck with whatever you decide, interested to hear more from people in the same boat.
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landoneducation View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote landoneducation Quote  Post ReplyReply Direct Link To This Post Posted: Dec 27 2018 at 6:03pm
Thanks for responding, kjzack. Good luck with your radiation. I hope you are doing well after chemo and surgery.  I'm less worried about the inconvenient side effects and more worried about how bad it is for you overall and the secondary cancer risks.  My Mayo Onco suggested I do the same (try it and see how I do on it)....I'm investigating other options, but asked my onco for a script in case I do decide to go on it, so I can take it before I change my mind.  :)
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Kellyless View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Dec 28 2018 at 5:54am
Just pondering this at 4am, since a backache has me up Wacko if they haven't said, I would ask: is this to only fend off filters ER+ cancer? Or is to to prevent fire TNBC, since my particular grade 3 aggressive tumor seems to grow _with_ er+ receptors? if it is for another TNBC occurence, I'd give it more serious thought. But then again, you've chosen breast soaring surgery, so perhaps the drugs make more sense? I've no idea. We've seen Many women here with this dilemma, if they've not done a study on this I'd like to know why? The patients for one are out there, we see it too often. 
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/16 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!
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landoneducation View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote landoneducation Quote  Post ReplyReply Direct Link To This Post Posted: Dec 28 2018 at 1:07pm
Hi Kellyless,  I'm sorry to hear that your back kept you up. Is it normal back pain or related to the breast cancer?  I think it's for those cells that are (on average) weakly staining ER+ - for me 19%.  What is fire TNBC? Or was that a typo?  I don't understand what you mean by my tumor seems to grow with ER+ receptors. Do you still have tumors in your body or do you mean, the recurrence was also ER+?  Out of curiosity, what was your ER percentage and staining (weakly, moderately, heavy) on your first diagnosis and did you take Tam then and if so for how many years?  Interesting that it came back so many years later - when TNBC recurrence stats are meant to drop significantly after 3 years.  I'm so sorry to hear that you had to face that news.  How was your recurring tumor different from your original tumor in terms of ER positivity? Sorry so many questions, I just can't seem to wrap my head around this one.  It's so helpful to have found this forum.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Dee1987 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 01 2019 at 11:38am
Hey there I was diagnosed October 31 yrs old er15% Iím currently in the middle of doing dose dense ec/t and now my brca1 results have came back positive so Iíve asked to have carboplatin Added. I have also to take hormonal after because anything over 10% apparently has shown benefit but because now i have a genetic fault Iíll be having my ovaries removed or full hysterectomy 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote ElizabethDarcy Quote  Post ReplyReply Direct Link To This Post Posted: Mar 06 2019 at 9:16am
Nice to know I am not the only one! I am 58. I had a lumpectomy November 2018 for a 1.3 cm grade 1 tumor. Sentinel nodes tested positive so had axillary node dissection. All 16 nodes removed were positive for TNBC. Have had 4 rounds of AC and now on 12 weeks of Taxol. Radiation is next and my oncologist wants me to do 5 years of Tamoxifen. At this point, I am planning on doing the Tamoxifen. I haven't done a lot of research on long term side effects, landoneducation, so guess I need to check it out. I want whatever is going to reduce the chances of recurrence.

Edited by ElizabethDarcy - Mar 06 2019 at 9:33am
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