Oncotype Gray Area

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CC2016
CC2016 Member Posts: 107
edited September 2016 in Stage I Breast Cancer

So I'm finally ready to ask questions from others. And TOTALLY need answers or at least strong opinions ;)

I was diagnosed with IDC Grade 2 in late May. Est/Pr+, HER2-. Had an MRI that showed the lump was the only one in both breasts (yay). Had a Genetic test done due to family cancer history and my age (41). It came back BRCA1/2 negative (yay) but a Check 2. According to my geneticist it means there is a mutation but research has yet to figure out what it means - it could be cancer related or it could be the specific arch of my eyebrows, for example. Once research figures it out they will let me know. With this news I went for a lumpectomy and 2 sentinel nodes removed in July. All came back clear (yay). Pathology came back as Stage 1 IDC and inSitu. I just realized I don't have a copy of the final report to share any more info right now. At my first MO appointment he recommended the OncotypeDX test and told me straight out if I was even in the higher end of Intermediate he would recommend chemo due to my age and otherwise good health. This has been the longest 2 weeks of my life. Got my result today and it is a 22. On the mid-low intermediate range but he is still recommending chemo and 8 doses of it (4x AC, 4x T)! I asked about having to do so many and he made it sound like it would be all or nothing. No other chemo options were given, but then I didn't ask either. After reading other posts I realized I don't know a percentage, pretty sure I didn't blank that out but I was in shock. I've also been reading other tests on these boards, which have not been offered. I have a request out now on a second look/opinion and I guess a third if #2 says no chemo. It looks like these test scores are not as great as they were promised to be...unless you're high or low I guess.

The two results of GRAY is about all I can handle. I want to do what is best for my future but gray is not helping...and it is a SOLID gray at that. I worry about the chemo effects on my family, 2 kids that have never seen their mom sick, a husband that is on disability and can't work (but can handle life, thank goodness) and a job I have yet to land. Oh yeah, we moved to another state 2 days after my diagnosis. I didn't have a job lined up at the time and thought I would take the summer to deal with cancer and treatments but had no idea I still wouldn't have a treatment plan in place 2 months later. That pressure is starting to mount although it is really of my own doing. Sorry, turning into a b*fest.

So what would you recommend my next step be? Or next questions to ask of my MO? Like I said, real answers and strong opinions are welcome!

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  • Optimist52
    Optimist52 Member Posts: 302
    edited August 2016

    Hi Newbie, I also received a 22 on Oncotype test. My MO seemed quite definite about no chemo for that number. I saw a different MO recently who also agreed about that, however I have ILC which is known to be less responsive to chemo. Could you put your diagnosis /treatment details on My Profile and make it public? It makes it easier for us to give more informed opinions.


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  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited August 2016

    Sorry you feel so stressed out! Treatment decisions can be very stressful.

    Some questions for MO or second opinion MO:

    Does my (young) age have anything to do with your chemo recommendation?

    How much does chemo reduce my recurrence chances?

    Suppose you choose not to do chemo, but go forward with radiation and hormonal therapy (Tamoxifen, AI). What are your recurrence chances then?

    Why have you chosen this regimen (AC X 4 and T X 4) for my cancer over other kinds (e.g., Taxotere + Carboplaitin)?

    As for chemo itself, I found chemo doable but my cancer was aggressive (triple positive) so it was a no-brainer. For intermediary people like you, chemo may be overkill. You are wise to question your oncologist's recommendation.

    Best wishes!


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  • CC2016
    CC2016 Member Posts: 107
    edited August 2016

    Looks like I figured out how to show that now. I know I still have holes but need to get an actual copy of the final report.

    Thanks for the questions. If only the number was 3 off in either direction it would have made this decision so much easier....

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  • smilethrupain
    smilethrupain Member Posts: 160
    edited September 2016

    Hello Newbie2016,

    my Onco DX is 29. My MO said I need to do chemo but not too much 4x of TC. If there were no Onco DX at all, then on the size of the tumor 1+cm, grade 3 and my young age, she would recommend chemo. and then work our way down to getting the recurrence score lower by tamoxifen, ovarian suppression and then AI

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  • KBeee
    KBeee Member Posts: 5,109
    edited September 2016

    The CHEK2 mutation may be contributing to his recommendation. Because they have only recently began testing for it, less is known about CHEK2, but when a variant was found with both my mother and I, I called and asked more questions. I found out that in some people with no family history, the variant does not seem to pose a high risk. In people with a family history, it increases your risk substantially. With variants of unknown significance in BRCA, most seem to be benign. With CHEK2, most variants are leaning towards being problematic. A second opinion may help you to clarify your risk and recommendation, and you could also request the Mammaprint which has no gray zone.

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  • CC2016
    CC2016 Member Posts: 107
    edited September 2016

    Thanks all. I did go for a second opinion just to see what he had to say. And it was pretty much the same thing. I honestly think I expected it by the time the appointment rolled around but it was still a relief of hearing it in another voice. He also brought up the fact that the size of the tumor is a major factor, if it was even half the size it would probably have been a difference plan altogether. Plus family cancer history, chek2, young age....it just all adds up when you hear it all together. Interestingly both oncs disregarded the thought of ordering a Mammaprint - one says it's "crap" (something about scientific data not being where it should be) and the other says that I'll still be in the same unknown position if it didn't come back high. I feel like I have done my due-diligence and am not putting myself, and my family, through something that isn't necessary. Still don't like it but am a bit more at peace with it. So, I had the Muggascan this morning, have a port-placement scheduled for next week and chemo should start after that. More adventures await.

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  • KBeee
    KBeee Member Posts: 5,109
    edited September 2016

    I tolerated chemo very well and wish the same for you. There should be a September 2016 chemo group starting on the chemo boards. I would definitely encourage you to jump in over there. My chemo gals were pivotal in my good experience getting through chemo and we all still keep in touch.

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