Why the ONCOTYPE

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florida2015
florida2015 Member Posts: 186
edited May 2015 in Diagnosed and Waiting for Test Results

I was given test and waiting for results, however, my tumor was less than 1 cm, no cancer found in nodes or other areas

and in reading about this test it is usually done for women with larger tumors. Am I missing something or is my surgeon overly cautious.

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  • labelle
    labelle Member Posts: 721
    edited March 2015

    My tumor was only 7 mm and I had the test done. I don't think it has anything to do with the size of the tumor, but with its genetic make-up. The test is generally used for those whose tumors are hormone positive and who have little or no node involvement. It is mostly a tool to see who might safely skip chemo.

    My oncotype score of 11 told my doctors that I would probably not benefit from chemo even though I did have a node involved at the time of surgery. My test was done prior to surgery using tissue from my needle biopsy. Anyway having the test done, just gives everyone more info to make good decisions, it's not really about being cautious, but about using all the tools the medical folks have to help choose a good treatment plan. I'd be more worried if they didn't want to do the oncotype testing.

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  • Meow13
    Meow13 Member Posts: 4,859
    edited March 2015

    Mine 2 tumors were 1 cm each. My oncodx was 34 a big surprise I didn't do the recommended chemo though.

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  • florida2015
    florida2015 Member Posts: 186
    edited March 2015

    Thank you , that explains things better for me, mine was 8mm and no node involvement. I am hoping I get the same low score you did because I don't want to go the chemo route at all.

    Thank you,

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  • florida2015
    florida2015 Member Posts: 186
    edited March 2015

    How are you doing now Meow? These choices are very personal. My mom had early breast cancer and chose not to even take the hormonal drugs and is 6 years cancer free.

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  • Meow13
    Meow13 Member Posts: 4,859
    edited March 2015

    Hi florida, I'm doing well no cancer it has been over 3 years tumor markers holding steady

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  • florida2015
    florida2015 Member Posts: 186
    edited March 2015

    great to hear!

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  • sunny92110
    sunny92110 Member Posts: 3
    edited April 2015

    I am waiting for the results of the onkodx test, the results will be in on 4/9. If the number is 11 or below the test will save me from chemo. I had a bilateral mascetomy the end of March and am staged at 2a. It is hard to keep waiting.

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  • windingshores
    windingshores Member Posts: 704
    edited April 2015

    I don't understand the single-minded focus on the Oncotype DX by doctors. I have a high grade, high ki67 tumor, with conflicting HER2 tests, and "focal lymphovascular invasion." I was told chemo would be needed and got ready, but when the oncologist discovered another doctor had done a post-biopsy Oncotype with a low score, I am not going to take only Arimidex.

    When did the Oncotype trump all other pathology?

    The company will not give me scores for the individual genes tested.

    Anyway, it may be that a an Oncotype from a surgical specimen will differ from the biopsy specimen, something to keep in mind.

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited April 2015

    winding - do you have a definitive Her2 result yet?  Oncotype is not designed to test on a Her2+ sample - either biopsy or surgical, so it seems like you need an answer to that first.  You can have a Mammaprint test - it looks at a larger number of genes than Oncotype Dx does and can be run on a Her2+ sample.

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  • windingshores
    windingshores Member Posts: 704
    edited April 2015

    Thanks Special K. I have two equivocal IHC's, one positive FISH on biopsy, and one negative CISH on surgical sample. Two oncologists, both at major cancer centers, are choosing to ignore the positive FISH done on the biopsy yet are relying on the Oncotype from that same sample. Their idea about the FISH from the biopsy material is that there might be some DCIS in the core biopsy sample which would throw it off in the direction of positivity for HER2. But if it had DCIS in it, why would they rely on the Oncotype which presumably would also have some DCIS in it.

    Today I ran around like crazy and convinced one oncologist at one of the major cancer centers to redo the ONcotype with the surgical sample. He has to justify it to Genomic Health. I have talked with Genomic Health myself three times.

    I also got the surgeon at the smaller hospital where I was first diagnosed, and biopsied, to talk to pathology about that FISH and whether they really think it is valid, if it contains a lot of DCIS etc.

    Then I made an appointment with a THIRD oncologist to discuss. This third one is at a cancer center that is not affiliated with the other two.

    My daughter is telling me that I am promiscuous and cheating on my oncologists. She laughed and laughed when I said "Yeah, my slides have been sent all over town."

    I just want someone to listen, understand my logical and valid questions, and then explain clearly.

    To top things off I tried anastrazole today and got really sick. It was probably the lactose. Am switching to Femara but it was discouraging. If AI's make me feel like this I'll take my chances without. I'm a positive person but it's tough to be positive when you feel like this on a med!



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  • windingshores
    windingshores Member Posts: 704
    edited May 2015

    Update: my HER2 as definitely negative with 60 cells counted in the FISH to be really sure (versus usual 20).

    I got my Oncotype retest back and it was an 8- same as the first. This was quite a surprise with grade 3, LVI, KI67 20%.

    After getting onto brand name Femara and ramping up from 1/4 to 1/2 to a whole pill, I am doing fine on it.

    It was my third opinion oncologist who accomplished all this retesting. I was distracted by surgery one of my kids was having, and was feeling so tired, and just managed to summon the energy for that final third appointment- so glad I found this doc!

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