ER+/PR- HER2- anybody else?

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  • christina1961
    christina1961 Member Posts: 736
    edited October 2011

    In contrast to the statements on the last link, from what I've read, not all PR- tumors are tamoxifen resistant but many are, particularly those in which EGRF and/or HER2 are elevated. I am going to ask whether it might be worthwhile to have my ovaries taken out and go onto AIs instead, though.  My EGRF is not elevated, though - but I have a KI-67 score of 50%.

  • otter
    otter Member Posts: 6,099
    edited October 2011

    Christina, I think you're right about the EGRF and HER2 over-expression.  After seeing how many of us are ER+ PR- but HER2-, I was surprised to read in so many that tumors with the ER+/PR- trait have a greater likelihood of being HER2+.  Statistically, that might be true; but what about those of us whose tumors were not HER2+?  Are ours also likely to be aggressive, or tamoxifen-resistant?

    Oh, and how did you find out that your tumor was not over-expressing EGRF?  Was that a special test done by the path lab where your BC was dx'd?

    otter

  • momand2kids
    momand2kids Member Posts: 1,508
    edited October 2011

    here's a thought--if indeed it is like triple negs doesn't that mean that the recurrence rate drops dramatically after 3 years (I feel like I read this somewhere at some point-- that the triple negs recur mostly in the first 3 years-or did I make that up?)

    this is so confusing--my pathology from both hospitals was er/pr+ but on the oncotype, it was ever so slightly pr-  My onc did not think it was a big deal--- but I will bring it up again in November.....

    sigh.

  • kira1234
    kira1234 Member Posts: 3,091
    edited October 2011

    momand2kids, you and I seem to have the same problem. 2 places said I was positive, but the Ono people said negative.

  • BarbaraA
    BarbaraA Member Posts: 7,378
    edited October 2011

    momand2kids, I LIKE that idea! I will hold onto that.

  • katsOK
    katsOK Member Posts: 142
    edited October 2011

    Dear Otter, Thanks for reposting the finding I found on PR+, ER-, Her2-.  You explain it much better than I do.  The article in the oncologist is especially enlightening I think.   I have a little bit of PR- but do not understand how much that helps,  (I guess some)  Never the less , I did chemo and am on an Al so am doing all I can do.  I have always tried to eat 5 fruit and vegatables a day but am trying to increase that to 8 a day.  Exercise is hard for me due to my osteroposis problems (an to tell the truth am overweight) but am trying to increase my exercise also.

     In case you would like to know I got information from Ask the Expert johns Hopkins that put me on the research path... I had been googling it and ran into a stone wall.

     I wish the modiators would set up a separate site for this group as they seem to have their own needs.

  • kal21
    kal21 Member Posts: 77
    edited October 2011

       Yes same with me .PR on pathology said 60% but onco said negitive. None of the drs seem

    to undrstand only said different labs.. surely it can  not be that much difference..

    I have read also about neg PR being aggressive.

  • ingoodcompany
    ingoodcompany Member Posts: 26
    edited October 2011

    Bar630 - my original pathology said I am Er positive 100% and PR neg HER neg, but my onco score said I am ER + and PR + HER - go figure............ I asked my MO about it and he said onco only looks at a very small sample. My onco score is 22 and I had a stage 1 grade 1  5.5mm tumor.

    Starting to feel like info overload.

  • Booboo2
    Booboo2 Member Posts: 59
    edited October 2011

    Maymom, your cancer sounds very similar to mine except that mine was grade 1, not 3.  I was treated with a lumpectomy and radiation, didn't need chemo. Tamoxifen was recommended but I declined out of fear of the side effects. I didn't want to increase my risk of getting other serious illnesses besides breast cancer.  I know tamoxifen can cause strokes, cancer of the uterus and other serious problems.

    I"m fortunate that I was grade 1.  The oncologists told me that being grade 1 puts me in a category that is not high risk for recurrence, and if a recurrence does happen, it will most likely be a local recurrence, not a metastasis. So now I am being checked every 6 months.

  • christina1961
    christina1961 Member Posts: 736
    edited October 2011

    Otter,

    They did do a special test on my original biopsy- when they found it to be triple negative, they tested it to see if it was a basal phenotype - the markers for the basal phenotype being either 5/6 cytokeratins or EGRF expression.  My test came back with 5/6 cytokeratins expressed, but not EGRF.  When they  edited my pathology report to add new findings (such as the 5-10% ER positivity), they never changed the original section that said my tumor was triple negative, basal phenotype but I know they consider it a weak ER positive now.  I still don't really know if I am or if I am a luminal B or a basal type, though - because most of what I read does not include basal type under the ER positive grouping.  I'll have to ask my oncologist - I see him next week.

  • kisxxoo
    kisxxoo Member Posts: 21
    edited December 2011

    I dont personally think you should put all your chips in on the Oncotype DX.... I am ER+/PR- and HER2- and no lymph node involvement.  My margins were also clear which kept me in Stage I.  The first Oncologist i saw wanted to wait and see what my Onco score was...i decided to get a second opinion....the next Oncologist i met was wonderful!! he explained that Chemo shouldnt be a question and that the Onco test doesnt matter because of my age (29) I did have it ordered already so i did get my results.  He explained the Onco test is only shows your likely hood of reoccurance in a ten year span....if you have more than 10 years to live i would recommend the chemo.... it will keep your chances of cancer returning lower your entire life... Also the Onco tests are not FDA Approved for testing for Her2, i would recommend the FISH test. it is one of the only two tests approved by the FDA. There are numerous reports of fasle Her2- reports from OncoDx.

    I am doing my second treatment of TC next week.  My hair just started falling out.  I do my treatments on Thursdays so i stay home friday and work half days monday and Tuesday.  I start to feel back to normal and got my taste buds back about 1 week later.  Remember to rest and stay stress free during chemo...the more you exert your self the harder it is on your body.  And remember eat lots of protein!! My labs keep coming back lower and i need to do a better job resting and eating more protein! Good Luck Ladies...we didnt ask for this battle but we will concur it!

  • Rose12
    Rose12 Member Posts: 95
    edited February 2012

    I do have the ER positive(97%), PR 1+ Negative?Not 0 negative?, and HER-2 negative. Grade 3.  I heard that the Her-2 negative can turn into Positive? I am newly diagnosed. I am waiting for the Oncotype score. I hope I don't get a high score because of the HER-negative. Will let you all know. I have read the the negative is good and then I read it can be bad. Not sure what to think. Very scary. I have been reading alot of information online and I am getting depressed. I have to stay away. It is too much information out there. Any feedback is greatly appreciated.

  • kira1234
    kira1234 Member Posts: 3,091
    edited February 2012

    Florida55 being HER- is a good thing. If you were HER+ they wouldn't even do the oncotype test, because you would be high. Good luck I hope you get a nice low score. I was right in the gray zone with a 24, which isn't a nice place to be. They leave the decision up to you which is very hard.

    If you have any questions just ask away. There are always lots of poeple who will give lots of good advice.

  • dawnmommyof4
    dawnmommyof4 Member Posts: 1
    edited October 2012

    hi skidoo did you have symptoms with your mets?

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