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How did you decide on breast cancer treatment based on Oncotype?
Breast Cancer | Last Active: Oct 4, 2022 | Replies (36)Comment receiving replies
I had IDC a grade 1, stage 1, 8mm tumor size and no lymph node involvement and my Oncotype came back as a 29 which also surprised us. Since it was so unexpected and was the outlier, I paid to have the Mammaprint test just to see what that test would show. It came back as low risk or recurrence. Then I find out after all of this two years later that I should have never had the Oncotype test because my tumor characteristics where never part of the TailorX trial which is the research study that is often referred to for the Oncotype. I did not do chemo after consults with 10 oncologists.
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@vegada the TailorX trial was intended to determine whether patients with intermediate Oncotype scores (11-25) did as well with hormonal therapy alone, or with chemo as well.
It would seem the reason your tumor "characteristics were never part of the TailorX trial" is that your score was higher than 25. However with grade 1 and small size, the decision to forego chemo might be supported by many docs. I am glad the Mammaprint had a better score and that your doc is relying on that.
The TailorX trial was not relevant for scores outside that range, since most with scores 0-11 were doing hormonal therapy only and most with scores over 25 were doing chemo. The Oncotype was being well before the Tailor X and the Tailor X was supposed to clarify things for those who were in that gray area of intermediate. Your situation, with low grade and small size, and score close to 25, might be seen- and was seen- differently.
I had discordance in tests as well. I had grade 3, LVI, high ki67% but low Oncotype at 8. After 5 years on letrozole, I also had a Breast Cancer Index and Prosigna Assay done and my scores were higher risk.
I am 8 years out from diagnosis.
I also had a positive HER2 test, two equivocals and two negatives (borderline) but no chemo or meds for HER2.
It is disturbing to feel we cannot rely 100% on testing but we all do the best we can. I admire you for seeing 10 oncologists. I saw 4! 🙂 Good luck!
https://www.nih.gov/news-events/news-releases/tailorx-trial-finds-most-women-early-breast-cancer-do-not-benefit-chemotherapy