Progesterone Positive, Estrogen Negative

[Pat94]

Hi. I am PR negative and ER 5%. About a year ago that was considered negative but now is considered low positive. When my medical onc wanted me to start Femora I deferred until my questions were answered. Major side effects with little or no good at my level was the general information so we are in similar boats. I asked my questions and there were no answers forthcoming. In reality, there are so few of us there are no answers. All the research shows low positive (I can't tell if that includes ER negative and PR positive but I think it does) show they live longer on average than ER/PR negative. Funny thing, not a single article said "if you take an AI" but I assume that is what they meant. In the end it comes down to deciding if you are willing to suffer the side effects on the (unlikely) chance it will do some good. There are many on this site who want to know they tried everything they could before waiving the white flag and others who value quality of life much greater than quantity. I finally decided to give it a shot so my family would know that I tried everything I could but also knowing if the side effects are too tough, I can stop it and hope the side effects dissipate. I have been on Femora for about 3 weeks. So far ankle stiffness at night which makes those 1st steps on the way to the bathroom tough, knees ache as I climb stairs which I use instead of an elevator, and 1 or 2 night hot clammies (my term for sort of a mild hot flash & night sweat combined).
I don't know what you will decide but think of your values and do it the way that is right for you. I do wish there were some clinical trials or studies that could use folks like us so someone would benefit from our efforts.

[Becky]

The bigger issue is that in some staining, especially to determine ER status, 2/3 s of ER negative but PR positive tumors are actually ER positive, even if only a little bit. As such, aromatase inhibitors work well on PR positive tumors. Since your bc returned in the bones, you should definitely give an AI a whirl. They may very well help you tremendously. If they don't and you have side effects, you can give it up. Can you send your slides elsewhere for a pathology look?

I am 50% er positive and PR negative. I sent my slides to Sloan Kettering and they said my tumor was 50% ER AND 30 % PR. Who knows but big cancer centers probably make less mistakes since they do the test so many times in a day.