How accurate are hormone receptor tests?

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njmae
njmae Member Posts: 48
edited June 2014 in DCIS (Ductal Carcinoma In Situ)

I had a surprise DCIS found when I had a BMX.  The detected one was ER positive.  The surprise DCIS consisted of multiple types (apocrine, cribriform).  One slide was sent for hormone testing and came back negative.  The DCIS was 3 cm.  So how do they know that the test on one slide is accurate for the entire DCIS, particularly when there are multiple cell types within the lesion?  Can hormone receptors vary within parts of the DCIS?  I hope this question is clear...

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  • BLinthedesert
    BLinthedesert Member Posts: 678
    edited May 2014

    There are some sensitivity issues depending on what assay (company) is used; and these can vary from lab-to-lab.  So, the primary question would be whether or not to take Tamoxifen?  It is unlikely, but not 100% impossible, that you could have two different lesions in the same breast of two types -- these would technically called two primaries.  Alternatively, you could have such a low amount of ER (the newer assays/methods do measure quantitatively, supposedly) that it is hard to call positive, but it is not completely negative.  Again, not common, but not impossible.

    If you feel you need clarity to make a treatment decision - then you can send out your slides for a 2nd opinion -- I would suggest making sure you get both (biopsy and mx) sent for this second opinion. If you don't necessarily need to know for sure -- then, just consider yourself "special" :)  


    Good luck!

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  • njmae
    njmae Member Posts: 48
    edited May 2014

    I had the biopsy in the left breast and it was strongly ER positive.  I had a previous lumpectomy in 2011 in the right breast.  It was very low grade and strongly ER positive.  However I figured enough was enough so decided on the BMX.  So the undetected DCIS was in the right breast and there was never a biopsy.  It was discovered post-mastectomy (man, was that a good decision!).  What doesn't make sense is that one slide is tested for a lesion which had multiple types and grades of DCIS.  It seems like the hormone status could vary within the lesion.  And, I am already taking Arimidex for the original 2011 cancer.  I see the oncologist next week but I suspect she will want me to continue the Arimidex for the next two years at least.  Since I'll be taking it anyway, I don't really see the point in retesting, especially since the DCIS in the other breast was strongly ER positive.  I guess I just don't understand how one slide can tell the whole story.  No impact on treatment.  Just a matter of curiosity.  Thanks.

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  • ballet12
    ballet12 Member Posts: 981
    edited May 2014

    Hi, NJMAE, you raise a good question.  My DCIS was only identified on excisional biopsy, because the core biopsy found atypia.  On the first excisional biopsy (which you could call a "lumpectomy"), they removed 4 cm of DCIS with no clean margins.  That large sample was found to be 30 percent reactive to estrogen, which (Blinthedesert please comment) I believe means that 30 percent of the sample was reactive to estrogen, and the rest was not (so mildly/moderately reactive).  The progesterone was negative.  In the second surgery (to try to get clean margins) the entire sample was 90 percent reactive to ER, meaning essentially almost all of it was reactive to estrogen.  The third surgery was clean, so no ER.  So, not all of the tissue in that first surgery was reactive to estrogen, suggesting that testing only part of it could possibly yield incomplete results. 

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited May 2014

    The way the percentage of ER is determined is that when looking at a slide with 100 cells on it, some number of receptors are present out of those 100 cells - so 30 receptors that are positive in the staining process on a slide of 100 cells is 30% ER+, likewise with PR+.  I am not sure I would categorize it as being "reactive to estrogen", but rather simply a count of how many receptors are present.  Another method of hormonal receptor measurement looks at staining intensity, but this is not usually indicated in the pathology report as a percentage score, rather an Allred score of 0-8.  Zero being less intensely stained, 8 the opposite. Tumors are not homogenous, and the percentage of receptors can vary according to what part or the tumor, or which slide out of several, is being looked at.


     

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  • njmae
    njmae Member Posts: 48
    edited May 2014

    I suspect that hormone testing could be improved upon.  My DCIS that was detected after mastectomy may be entirely ER negative, but I am on Arimidex anyway.  But how about other people who test negative on one slide out of several and are not prescribed Tamoxifen or an AI?  It sounds very possible that part of their tumor could indeed be ER positive and they might be missing out on an effective treatment.

    Ballet12, when you said that the entire sample of the second surgery was 90% positive does that mean that more than one slide/cassette was tested?

    I just looked at my path report and it appears that the DCIS portion of a fibrocystic blob was comprised of 4 cassettes, a 4 mm stellate lesion.  Just one of the middle cassettes was tested.  Maybe this is standard procedure.

    I find this very interesting but also depressing, since so much treatment hangs on hormone status.  Perhaps there should be more thorough testing of initially ER negative tumors.

    I am seeing the oncologist on Tuesday and will ask her.  Will post her opinion.  Thank you.  I have learned a lot from your responses.

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  • njmae
    njmae Member Posts: 48
    edited May 2014

    I saw the oncologist and asked about the accuracy of hormone testing on just one slide of my DCIS, especially in light of the mixed grades and cell types.  She said it was an "interesting" question and theoretically the hormone status could indeed vary within a lesion.  However, sometimes there is not enough DCIS in a slide to do testing.  She also said if portions look different, the pathologist will (might?) test additional slides.

    For me, I am on Arimidex for two more years due to the original cancer.  She said that she would not have advised me to do an AI for the DCIS, even though one was strongly positive, since I had a BMX.  Both DCIS lesions were about 5 cm from the chest wall.

    Regarding the length of time on AIs:  she said that within the next year, there may be new recommendations based on studies which may support 7 or 10 years instead of the current 5.  So even though I am now looking at two more years, she may recommend more by the next time I see her.

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