Pathology results different from biopsy results. Please help!

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havehope
havehope Member Posts: 503
edited February 2019 in Surgery - Before, During, and After

I received my pathology results and the good news is that all nodes removed (8) are negative, clear margin, no need for radiation.

The bad news is that the results for the receptors are different than the ones from the biopsy took from the tumor. The biopsy showed ER+ (90%) PR-/HER- and now the pathology reports (after mastectomy) showed triple negative.

The two procedures were done at two different hospitals. The doctors are working to "reconcile" the results.

What should I do next? Whom should I trust? Should I ask for a third opinion? Anybody had similar situation?

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  • whippetmom
    whippetmom Member Posts: 6,920
    edited November 2008

    simvog, I spoke with my oncologist today and mentioned your diagnosis of being ER positive on biopsy and the path of the tumor biopsy reported it as ER negative.  She felt that it was "very rare" that this would occur, especially since your ER was so "strongly positive" at 90%.  But she said that it can happen...it can be that the original biopsy was incorrect as to the ER receptor status.  Here is what Susan Love notes in her website about ER positive/PR negative tumors:

    "Whether your nodes were negative or positive, it may be helpful to have the Oncotype DX test done on the tumor tissue. This test can help assess your recurrence risk, and thus help you and your oncologist decide if you should have chemotherapy as well as hormone therapy."

    IYou might want to ask about that test.  Your need for chemotherapy [I read one of your previous posts] is probably necessary more due to the fact that the PR receptors are negative than tumor size.  Grade may come into play, but it appears to be the fact that there is a "negative" in the assessment.  But it will be very interesting to see how the two facilities "reconcile" your results.  I would never hesitate to ask for an independent opinion, if the discrepancy is not settled to alleviate your concerns. I can certainly appreciate how frustrating this is...waiting for answers.  Undecided

    Praying that you get some clarification and SOON!

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  • ailenroc
    ailenroc Member Posts: 308
    edited November 2008

    Get a second opinion on your post surgery path tissue. Get it from a reputable hospital that has a breast cancer unit where the pathologist is trained and experienced in reading breast tissue. Your really want to know what it really is.  I had three readings; the first two concurred: FALSELY. The third done at a breast cancer center, got it right. The oncotyping is a good idea in addition ... although it can, I believe only be done on ER+.

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  • havehope
    havehope Member Posts: 503
    edited November 2008

    thank you for your answers.

    My surgeon said that the hospital where I had the surgery  is repeating the test again and that I should wait. In the mean time I am requesting the biopsy slides.

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  • PaminFL
    PaminFL Member Posts: 231
    edited February 2010

    y

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  • havehope
    havehope Member Posts: 503
    edited November 2008
    The hospital (surgery) had confirmed they found ER+. I am still waiting from the 3rd party, but that will take some time.

    Thank you all for your support.

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  • whippetmom
    whippetmom Member Posts: 6,920
    edited November 2008

    simvog:  So what you are saying is that the hospital where you had the mastectomy, WHERE you were told you were triple negative, has NOW told you they ran this through again and now determine you are ER positive?  In other words, the two facilities concur you are ER +?  This is good news, if this is the case....

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  • auriga
    auriga Member Posts: 315
    edited November 2008

    I have different results as well. My core biopsy said I was ER +(94%) PR +(9%) and HER2 negative. It also said grade 2.

    I just got the pathology report after surgery and it says ER + PR - and doesn't even list the HER2 status at all. It also says grade 1 now. Can you go from a grade 2 down to a 1? The tumor was 1.7 cm. It also said there were microscopic tumor cells in the sentinel node. Is that important?

    I have been doing some reaseach on the PR negative tumors. Some think it doesn't make a difference in treatments and others think it means chemo is a given.

    I don't see my onc for another 2 weeks, and if he decides to do the oncotype test, I have a long wait ahead of me for the results. I will go crazy before then wondering if I need chemo or not. Anyone has any ideas on the changing results and whether you think I can expect chemo? Thanks

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  • whippetmom
    whippetmom Member Posts: 6,920
    edited November 2008

    auriga:  You can find out if your healthcare provider will cover the Oncotype DX test - which will show your liklihood of cancer recurrence and also the degree to which your cancer will or will not benefit by chemotherapy.  You can read about the test here:

    http://www.breastcancer.org/symptoms/testing/oncotype_test.jsp

    You can also google and find the actual Oncotype DX website and I believe they have a list of health care providers and/or insurance companies who will cover this procedure. My friend was ER+ and PR- and had the test and found that chemotherapy would only minutely [something like by 1 or 2 points] improve chances of recurrence, and so it was easy for her to decline.  Others on this list have taken the test, but again, as with all of these tests, it will be a waiting game for the results. Cry

    Isn't it always a waiting game with this disease?  But you are THROUGH the surgery - hooray!  Hope you are recovering well.

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  • auriga
    auriga Member Posts: 315
    edited November 2008

    Thanks whippetmom for the info. The news about your friend is very encouraging. I feel I have been through enough already with the mastectomy and don't know if I could handle chemo on top of it.

    You're right. This is a waiting game. I guess I'm not very good at it. Funny, I used to think I was a very patient person.

    Good luck on your surgery. It does get better with every passing day. I guess you will be spending Thanksgiving Day in the hospital?

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  • sushanna1
    sushanna1 Member Posts: 764
    edited November 2008

    simvog--

    The pathology report from my biopsy also differed from that of the lumpectomy.  I had both sets of slides checked at another pathology dept.and the results were similar.  One surgeon called it "multi-focal" which I thought meant more than one location, but if I am understanding it correctly meant that I had several variations in one location.  The oncologist explained that cancer may not be uniform and receptors may not be uniformly distributed throughout the tissue.  While I didn't like the explanations, I could not come up with anything better.  Unfortunately, there are more more grey areas than scientists often want to admit.  Hang in there.  Send me a PM if you are still worried.

    Sue  (Late April 2001 Biopsy: IDC High grade tumor, 7/9 on the Bloom Richardson scale homone receptor negative plus DCIS; June 2001 Lumpectomy: IDC Low grade tumor 4/9 rating, 70% ER +, 20% PR+ and DCIS)

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  • whippetmom
    whippetmom Member Posts: 6,920
    edited November 2008

    Yes auriga, Thanksgiving Day in the hospital.  I suppose I know already what I'll be getting for lunch.  Hope you get some more clarification from your oncologist. I'll ask my own oncologist's thoughts on the PR negative issue when I see her next Thursday. 

    Deborah

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  • havehope
    havehope Member Posts: 503
    edited November 2008

    whippetmom:,sushanna1:

    My doctor gave me the same explanation. He said I have a mosaic tumor and now they are evaluating more slides to compile a profile based on average findings, but definitely I am ER+ not TN.

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  • auriga
    auriga Member Posts: 315
    edited November 2008

    Thanks whippetmom. I would appreciate it. I keep reading the ER status is more important than the PR status, but I am still worried that it will have some effect on a chemo decision.

    Hopefully, they will let your husband enjoy a Thanksgiving meal in the hospital with you. That would be nice.

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  • havehope
    havehope Member Posts: 503
    edited November 2008

    My doctor called me today and the hospital said the tumor is only 5% ER+ and they don't recomend Tamoxifen. I am still waiting for the results from the 3rd party.

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  • LiveLoveBelieve
    LiveLoveBelieve Member Posts: 25
    edited November 2008

    Hi -

    My biopsy showed no necrosis;  post-mastectomy the tumor was found to have necrosis.

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  • ZEKE
    ZEKE Member Posts: 65
    edited February 2019

    havehope,

    How did this all work out for you? My Pathology report on my biopsy said I was positive and could have hormone therapy.  My ONCO score came back (41) and on the bottom of it it says triple negative. The exact opposite of my biopsy pathology result. The oncologist said he is going to call the pathology company that did the biopsy result and see and he hope there is a little more tissue left to re-do this test.  Here is what I feel.  This is my life at stake here and now 2 different companies say 2 different things. Did they get the right sample - was the correct sample labeled correctly or was it someone else's?  I cant make such a hard decision on whether to get chemo or not if these results are both different. I think its terrible.

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