IMPORTANT info on ER expression in TNBC

i was 5% ER+ last time... and my onc has me on femara.... says it might help a little bit.....

in 1999 i was 90% ER+ and PR+ al;so,   in 2009 my BC was 5% ER+.  but that was considered TNBC at that time

Charlene -- thank you for sharing.  I think that if you ask 100 oncologists the question whether to treat or not with <10% ER+, you will likely get a divided response and it may ultimately boils down to whether side effects outweigh potential benefits.
As mentioned, the heterogeneity of ER expression is also a contributory factor to the heterogeneity seen at the molecular level with TNBC.
If TNBC trials start restricting enrollment to those with ER <1 %, as some have advocated, it will leave those of us with ER 1-9% in never-never land.


Edited by Lee21 - Mar 26 2012 at 9:00pm

Hi,

Lee, thanks for pointing out:   Definition of ER negativity:
                                                           pre 2010 -- <10%
                                                           2010 -- < 1%

Per my path report:
        estrogen receptor:          negative   (0%)
                         criteria for hormone receptor analysis:
                                   positive                      >10% of nuclei immunoreactive
                                   positive - low           >   0%      ---       <10% of nuclei immunoreactive
                                   negative                     0% of nuclei immunoreactive

In view of 2010 ER negativity definition being <1% ......wondering if current or any recently
completed clinical trials will report their findings both ways.......for TNBC with ER <1% and
for TNBC with ER<10%.....now, wouldn't that be great!

Thank you for sharing that your consult MD would consider some form of anti-estrogen treatment
if tumor at surgery continues to show a tiny amount of ER expression.   This would be something
one could discuss with one's physician if one was in that situation.


With caring and positive thoughts,

Grateful for today..........Judy

Well mine, done in 2008, was not even that informative. The path states ER: Negative (score of 0/3)

Mainy

On the breast cancer.org website, I found a description of 3 methods to assess hormone receptor expression:
http://www.breastcancer.org/symptoms/testing/types/ihc.jsp
Yours was one of the 3 listed, unfortunately as you stated, not very informative.

Apparently there was a lot of lab-to-lab variation in the staining protocol used as well as subjectivity of the pathologist who did the scoring, necessitating the position paper from ASCO and the College of Pathologists. I wonder if it would be worthwhile on your next visit to the doctor to re-address the issue with them.  Perhaps their thinking has changed since it has been several years (so GLAD you are NED).

Lee

WIth all the bussle around getting 2nd and 3rd opinions, I cotinually grind my teeth when I think that so many of the 2nd opinions still base their opinions on the same set of scans and path reports. I thought at the time that it was strange to start out at my local clinic for a biopsy, have them do the report and then take that set of results to a large institute (Fred Hutch) where they did not perform a 2nd biopsy, just for their own benefit (and mine!).

Mainy and all,

Sharing a thought.

At my 2nd opinion, the 2nd facility pathologist reviewed my slides from where I had my biopsy done.
At least, the 2nd facility had their pathologist's and the 1st facility's pathologist opinion for the consult.
So, when one has a 2nd opinion, one might want to confirm that one would bring one's slides   ( some
places want them sent ahead of time.......be proactive and keep track how the slides are handled, mailed
etc.) for a 2nd pathology opinion as part of the consult.   This is probably being done at some places....
not sure if done at all......and may not be offered at some centers.   In my situation, both pathology
reports were in agreement.

Mainy, your post raises a possible general question to consider ( especially when plan is
neoadjuvant chemo) that I had not thought of before:
     Did one's 1st facility obtain the best biopsy specimen to base treatment on?
    To all who posted above, not questioning anyone's pathology results just thinking of a possible
             consideration after reading Mainy's post.

Grateful for today...............Judy

Edited by Grateful for today - Apr 01 2012 at 11:00pm

Judy, yes that is a good question to ponder. In my case Fred Hutch did not ask for any samples, only the written reports. Now that I can look back and have had the experience where techs have completely missed out on accuracy, despite the best human efforts possible, I have to wonder if any number of things could occur...actual mix up of slides and files...that again since these are the foundation of your whole treatment wouldn't it be wise to double check with a 2nd biopsy and review and not even just a 2nd set of eyes on the sample? I'm sure in the balance of all things considered, the cost of a 2nd biopsy is pretty darn small.

Deb
You can ask the second facility to send it back to the first if they haven't done so already.  If they did get lost, the first facility should still have the paraffin block and additional sections can be cut and stained. When I took mine for my 2nd opinion, I asked for them back the next day and hand carried them to my cancer center here. On a related matter, every time I have an imaging test done, I asked for the images to be copied onto a DVD and I hold onto them. 
Lee