Low ER+, tamoxifen, and cessation. Need your stories

JWoo

I started tamoxifen in December of 2013, after my adj chemo and Dmx. I had 2 separate tumors, one triple neg, the other with less than 15% estrogen uptake. My oncologist said that because one was 3N and the other so low, she's okay if I want to stop taking Tamoxifen.

She said that unfortunately, there isn't much information regarding ER percentages and therapies, it's just is it positive or negative.

I've been trying to find any kind of study or information about lower estrogen bc and tamoxifen, but have turned up very little.

What I'm looking for are other people in the same boat willing to share their stories.
What % ER+ was your tumor. How long did you take Tamoxifen? Did you have a recurrence? How far out from stopping? Did your side effects go away? How long did that take? Etc.

I'm totally out to sea about this.

Thanks.

JWoo

anyone?

Georgia1

Hi JWoo. I'm replying to bump this up so others can see it. Personally my tumor was 95 percent ER so I'm hoping to be on Tamoxifen with my current negligible side effects for five years or more; I have osteoporosis so am trying to avoid AIs.

Hoping someone smarter comes along soon. All I can offer is that you might want to ask for a genetic test for the gene that tells you if you're a good or poor Tamoxifen metabolizer. If the latter I would definitely stop.

JWoo

Thanks, Georgia! Best of luck to you, and happy new year