Oncotype score before surgery

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Anonymous
Anonymous Member Posts: 1,376
edited June 2014 in Stage III Breast Cancer

Did anybody have oncotype testing prior to mastectomy?  This happened with me.  Onc sent a biopsy of tissue off to be tested and it came back grade 1 and score of 11.  After SNB and BMX, I had a huge tumor and 4 pos nodes, high grade.  My question is I would think the score on the tumor tissue may have been different, according to where they take a sample?  Anybody asked this of their onc?  My onc described my bc as having many faces, all the way from no activity to high-grade.  Now I gotta wonder how accurate other genetic testing is...

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  • bevin
    bevin Member Posts: 1,902
    edited July 2012

    HI Shelly,  I have never heard of Onco being done before surgery. Normally its done on the tumor itself. I do know there are guidelines on the Genomic site on how they are to take the sample and ship it. I'd assume though that with 4 pos nodes and a large tumor your doc is recommending chemo. If you're not comfortable, I'd insist they send another sample and that you're not charged for the review. 

    I have understood that diff areas of the tumors can have different facets. I'm not sure if thats fact or not, but recall reading it. 

    Good luck , I'm sure others will be along to chime in.

  • Dianarose
    Dianarose Member Posts: 2,407
    edited July 2012

    Shelly- I had my oncotype done after my lumpectomy and my score was a 6. Three weeks later I had a BMX and went from stage 1 to IIIc with 17 out of 17 nodes positive. I really think that the oncotype should not be done on biopsies or lumpectomies because it might not be so accurate. My MO said it didn't matter what my score was at that point because I was dealing with so many positive nodes and a lot of lobular cancer that didn't show up on any of the testing. So I am doing CMF chemo currently and will be done the end of October followed by radiation.

  • AnnNYC
    AnnNYC Member Posts: 4,484
    edited July 2012

    Shelly, if you could have it redone on the large tumor, I would.

    Now, I (and someone else here on BCO) had kind of the opposite problem -- we both had excisional biopsies (removal of small lump -- essentially a lumpectomy), followed by mastectomy after initial pathology.  Then the mastectomy tissue was sent for the Oncotype test -- and there wasn't enough tissue!  So the original lumpectomy/excisional biopsy sample needed to be sent for testing.  This caused a delay of at least 3 or 4 weeks.  So that's probably why some places have "learned" to send the initial biopsy material for the test.  But if, as in your case, the initial biopsy was only a small part of a much larger tumor, it probably would be best to test other areas of the large tumor.

    (BTW, this happened to me in New York, and the BCO sister in Alabama, so you can't blame it on one surgeon/hospital!)

  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2012

    Dianarose/AnnNYC:  I had this testing done 3 1/2 years ago.  Onc said same thing like the score meant nothing due to the much larger higher grade tumor being found.  It's sure not building confidence for us women to believe we are doing great with the low onco score, then finding out there are positive nodes and higher grades involved.  Any node positive, even just one, and my onc recommends chemo, as do many other oncs.  But of course it is up to the individual still.  Thanks a bunch --

  • dlb823
    dlb823 Member Posts: 9,430
    edited July 2012

    Shelly, grades often change between biopsy tissue pathology and actual tumor pathology.  It's really not unusual to be told you're a Grade 1, for example, then find out that other parts of the tumor were Grade 2 or 3 -- the same way a biopsy sometimes indicates DCIS, but surgery reveals invasive bc as well.  That's why it doesn't make any sense to do an Oncotype on tissue from a biopsy. The Oncotype would not have even been done or necessary with 4 positive nodes.  So it wasn't the test that was inaccurate -- just that a proper sampling of tissue wasn't provided.      Deanna

  • pp729
    pp729 Member Posts: 135
    edited August 2012

    For my mom. the Onco test used tissue from her excisional biopsy (which was essentially a lumpectomy because they removed the entire mass).  The unilateral MX was 3 months after the biopsy -- mainly because she needed a mammo, US, MRI, clearance by her cardiologist for surgery, and we went for a second opinion. 

    I am not aware that it matters when you have the tissue taken -- biopsy or surgery -- but what is important is that they have enough of the sample to do the tests.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2012

    dlb823:  I'm not sure where else they would have taken the tissue.  From what they saw on US, they went right to the tumor site and removed 4 pieces of tumor.  I'm going to ask the onc next visit about it and post what she says.  Until the actual BMX, they had no idea that my tumor was larger, because it didn't show up on MRI.  This is why we need better testing.  take care. 

  • dlb823
    dlb823 Member Posts: 9,430
    edited August 2012

    they had no idea that my tumor was larger, because it didn't show up on MRI

    Shelly, based on what she knew from imaging, my first BS told me I had Stage I, Grade 2 bc with no node involvement and that a lumpectomy + rads was all I needed.  After surgery, I had a Stage II bc, a much more extensive Grade 3 lesion, a positive node with extracapsular extension, and a recommendation for an immediate mx.  When I went for a second opinion, it turned out I also had 2 additional lesions no one had seen on previous imaging.  When I had my mx to get those, my second opinion BS actually found a very tiny 4th lesion.  I think the point is, you don't know what you don't know until you have all the information. 

    In some cases, such as Ann's, an excisional biopsy may get everything.  Unfortunately, that's the unpredictability of bc. 

    I couldn't agree with you more about needing better testing.  In some cases (and I'm talking about my own), we also need docs with less ego who don't assume they know everything.   I'm not trying to debate you on this.  I'm just sharing my point of view based on the horrible, surreal experience I went through that I never want anyone else to have to go through.    Deanna 

  • Joanne_53
    Joanne_53 Member Posts: 1,477
    edited August 2012

    Shelly56, when I had my ultrasound guided core biopsy, the Radioligist removed 4 or 5 "plugs" from the tumor. That was what was sent to be examined and that is what determined the malignancy. My onco typing was done after my lumpectomy.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2012

    Joanne & Deanna:  I should have clarified. The doc only took one biopsy for both reasons:  to determine malignant cancer cells and also to send that same biopsy tissue on to do the oncotype.  The biopsy plugs were grade 1 - well-defined, so imagine my shock when after BMX other areas were grade 2 & 3.  So it seems onco testing was pretty much for nothing, since there was found to be nodes pos "after" surgery, not before.  I was told the onco score was also two-fold:  determines recurrence factor, and whether or not chemo would be beneficial.  Did either of you get the BRCA ?

  • pp729
    pp729 Member Posts: 135
    edited August 2012

    Hi Shelly56, just wanted to clarify something -- you said above "So it seems onco testing was pretty much for nothing, since there was found to be nodes pos "after" surgery, not before."  As I understand it from my mom's Onco testing and research on it, the Onco test does not determine node positivity or negativity.  It gives you a recurrence score and it tells you whether chemo would be beneficial or not, but does not determine the status of your nodes.  I could be wrong about this, but seems that's how it was explained to us.  The Onco test is also different from the grading or staging of your BC.  So the Onco test is really an additional tool to help you and your doctors determine the treatment plan that is best, taking into account it plus your pathology report, the BC grade, the BC stage, and other factors.  Some women on these boards seem to do the Onco test, and some do not.

    I think everyone on these boards seems to have some type of node testing.  My mom had a sentinel node biopsy during her mastectomy.  I know there are varying types of procedures that they can do for testing the nodes, and SNB is just one of them.  For her, they tested 2 nodes and they were benign.  Sounds like you also had the SNB

  • dlb823
    dlb823 Member Posts: 9,430
    edited August 2012

    Shelly, I didn't have BRCA testing.  It was never mentioned to me by my local docs, in spite of having a sister who is a 2x bc survivor.  UCLA's genetics counselor asked me questions about family hx, but explained that since my sister and two first cousins had all tested negative for a BRCA gene mutation, it was highly unlikely that I would have one, especially since I was older than they were at dx. 

    Did you have chemo based on the 2 positive nodes?    Deanna

  • Joanne_53
    Joanne_53 Member Posts: 1,477
    edited August 2012

    Shelly, I did not have the BRCA testing. I am the 1st in my family for breast cancer and I am sure that my age was a consideration also.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2012

    pp729:  Read the response of Dianarose that says after her surgery she went from stage 1 to 3 and the fact she was then dealing with so many positive nodes, the treatment plan was probably going to be the most aggressive possible, i.e., chemo, rads, etc.  That is the point I was making that the onco testing on a few plugs prior to mast surgery did not reveal the full pathology of my tumor. 

     NYC: Yep I would have liked if they would have sent a piece of the bigger tumor after surgery for testing, but my surgery was already over 3 yrs ago, and I'm pretty sure they went at treatment full bore. 

    Shelly

  • pp729
    pp729 Member Posts: 135
    edited August 2012

    Hi ladies, it seems interesting to me that the drs seem to stage the cancer at different times for different patients.  Dlb823's drs gave an initial stage based on imaging and the another higher stage after surgery, and i have read on these forums where other women had their stage change as well.  For my mom, we kept asking what stage it was for a few months between the excisional biopsy and mastectomy, but her BS and Onc said they would not stage it until they had the pathology report back from the mastectomy.  We did know the Ki67 score, the Richardson Grade, and the Onco Score before the mastectomy, but not the Stage until after the surgery.

    I asked my OB/GYN about the BRCA test and she said that generally it is not recommended and generally the insurance will not cover it unless you have at least two first degree relatives (mother, sister or daughter) who have had breast cancer or ovarian cancer.  So, I did not have it.   My mom also decided not to have it as she has no family history of BC or OC. 

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