Anyone on Tamoxifen/ER/PR neg.

[Sandy H.]

Just curious if anyone on this board is on Tamoxifen and ER/PR neg.? I didn't think there was any benefit on taking it and the side effects aren't good. If there is why would you take it? Hugs, Sandy

[Bonnie]

I'm er/pr negative and my onc. said it wouldn't help me. She had no question about it.

Bonnie

[Merridith]

I am ER/PR neg. My doctor asked if I wanted to take it. She said that there were some studies to indicate that taking it had a marginal survival advantage. She also stated that it was the hospital's standard practice protocol to offer it if you were negative. She didn't push it though.

I have read that when you are given the "negative " hormone status that there is a possible variation within the tumor and DCIS. Since the pathologists don't test and stain EVERY single bit of tissue, you have to keep in mind that some areas might be positive that were never tested. Also a negative designation might also mean "very weakly positive", but convention places you negative. You can in fact inquire as to if you were "weakly positive".

I refused the tamoxifin. My reasoning was: side effects and minimal statistical benefit. I also beleive that the less you medicate your body and muck with your hormones the better off you will feel. But this is a personal bias.

Good luck with your decision.
Merridith

PS: If you check out this site further, there is a new tamoxifin replacement med just out that apparently has fewer side effects and has the same benefits as tamoxifin. Check it out.

[Sandy H.]

I am not the person making the decision to take it. My oncologist told me I am ER/PR neg. no sense in taking it. I was asking for someone else. Thanks for the reply. Hugs, Sandy

[*_Christine_*]

Sandy You're right , ER/PRneg usually do not benefi

[*_Christine_*]

Sandy You're right , ER/PRneg usually do not benefit from hormone inhibiting drugs. There are times that Oncs will give tomoxifen for a short time to try to get the cancer in remission based on age of patient and % of hormonal status.
Hugs, Christine

[JKrak1975]

I am er/pr - but my surgeon is suggesting arimidex because I also have atypical lobular hyperplasia in the path report. The oncologist is unsure if I should take the arimidex but the surgeon seems pretty sure. She said if I presented with just he hyperplasia, she would put me on it. Not sure why the oncologist is so iffy about it. At any rate, I've decided to try it for a month. If I don't have bad symptoms, I'll continue. If I do, I'll take my chances:-) Judy