Anyone out there ER-/PR+ and taking Tamoxifen?

MamaMia41

I just found out that I am ER-/PR+, which is news to me because my biopsy indicated ER-/PR-.  I just met with a medical onlcologist because of a clinical trial I am in and she was the one to tell me, 4 months after this was determined in the path report from my lumpectomy!  I had trouble with close margins and had 2 other surgeries, so there were bigger issues I guess.

Anyway, she thinks I should consider taking Tamoxifen even though many doctors don't think it to be very beneficial for someone only PR+ (and I guess it is "weakly" positive, 70%)  Is anyone in a similar situation, I would love to hear your thoughts.

Deirdre1

Lauren, I've heard this discussion before but my opinion is that there isn't any strong evidence to suggest that it will be helpful (again my own opinion!) - so my first suggestion is to have you tissue sent out to a new pathology lab to have it reviewed to see if you are indeed ER-/PR+.  My concerns are that there is a great deal of press out that that suggests that PR+ only means that the lession "reacts" to progesterone, but there isn't much tracking of HOW it is reacting.. There are even some suggestions by pathologist that they don't even bother to test for PR rates because it has little to do with the treatment...  It is becoming more popular to suggest Tamoxifen though in this type of situation so perhaps there is starting to be "proof" or at least some antidotal evidence that PR percentages ARE in face important..

<edit - I had ER and ER IS an indicator of treatment but PR doesn't have much support for treatment - so this was an edit to correct a type O but in important type O>

So again I would suggest that if you are going to consider this you might want a fresh pair of eyes on the tissue to either re-affirm the findings or debate them... Good luck!!

MamaMia41

Thank you Dierdre, that is good advice.  I will look into getting my tissue tested again by another lab.  I really want to make sure this will be beneficial for me if I am going to be taking it for 5 years, especially when I read about all the potential side effects.  Thanks again!