Roll call for premenopausal Her+ and some hormonal positivity

[Janelle]

I decided I wanted more information about my path report so I called the pathologist directly. My path report gives wide ranges for ER and PR positivity.

For example, my path report states I am 2+ Er positive which corresponds to a range of 26-75% positivity. My path report also states I am 1+ PR positive which corresponds to the range of 5-25% of PR positivity.

I see, though, that many girls get an exact percentage of their ER/PR positivity. Why didn't I get this? Well....apparently, my path was just eyeballed by the pathologist which is a rather crude way of determining the percentages in my layman's opinion. He informed me that you can have a computerized image analysis done which results in more precise numbers. Also, Oncotype DX has started to test for ER/PR percentages. He thinks this is the most accurage way to determine how ER/PR positive you are. He said he would be happy to send my slides out to be tested but insurance probably would not cover the $3000 test. Now if I knew the test results might change my treatment protocol I would seriously consider the test but I don't get the idea that anyone knows definitively how to best treat me. The pathologist actually suggested I get a 3rd opinion for a tie breaker on my pressing issue which is SHOULD I BE TAKING TAMOXIFEN or other hormonal therapies? Do hormonals work on HER2 cancers if they are ER positive and either PR positive or negative. Does tamoxifen have a negative impact on PR negative tumors?

My primary onc wants me to take tamoxifen.
Dr. Slamon, the HER2 guru, tells me hormonals do not work particularly well in ER/PR positive cancers if you are also HER2 positive and it might not work at all. Oddly enough I metabolize tamoxifen normally but I don't have side effects....Does metabolization matter in the Her2 setting?

The pathologist told me he doesn't think the ER/PR percentage is the determining factor for how well Her2 tumors respond to hormonals and that in his opinion it seems that hormonals just don't work as well on any of us ER/PR positive girls no matter how high or low the percentages are. If this is true my new "nearly negative PR status" should not change my treatment protocol, right?

Anyway, the nice pathologist agreed to review my slides again so he could narrow the ranges that are indicated on my path report. He said it looks like I am about 60% ER positive (at the high end of the moderate range) and only 5-10% PR positive (at the low end of the PR positive range- and "close to negative").

Also, my path report indicated that I had a 30% Ki-67 proliferation index. He revised that and told me it was closer to 40%- but the good news is that chemo works best on fast growing tumors so this isn't all bad news. I admit I am a bit shaken up by my nearly negative PR result and the increased KI-67 number.

Now I am wondering if I should have my slides sent out to another institution for a second review of my pathology. I can't believe how imprecise my path report is....

So how may Her2 positive girls are out there with ER positivity and either low or negative PR positivity? And are you taking hormonals???

Thanks!
Janelle