How did you decide on breast cancer treatment based on Oncotype?
Hello, I was diagnosed with Invasive lobular carcinoma in February 2021. I had the lumpectomy in April, please see the final results attached. I was HER2 – and my genetics testing came back negative as well. Only radiation therapy was suggested at the time.
Now my Oncotype result came back and it is 24. My doctor suggested chemotherapy since I have a higher risk for the cancer to return.
Although he also mentioned to me that chemo usually is not effective for lobular cancer.
Was there anyone in the same situation?
Can I get any advise?
I would truly appreciate any comments.
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Focusing on the good ending is a good place to center your attentions, nlb.
It must've been a relief to review every item on the pathology report with your oncologist and that she took the time to answer all your questions and lay out the options, benefits and risks. The medical professionals are not only trained in reading reports, they have all the statistics and your personal medical history at hand to help guide personalized decisions right for the patient in front of them.
Are you feeling comfortable with the decision to not do chemo? Which AI will you be starting – letrozole?
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.
@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!
I agree that it is very disturbing that we can't rely 100% on testing. What I am saying is that they don't recommend people with my tumor get the Oncotype test done because the tumor size that was studied started at 1cm and mine was 8mm. T1bN0 Cancer stage was not part of the Tailor X and so most doctors don't order the Oncotype or shall I say it has been published that doctors should not order an Oncotype for T1bN0.
The TailorX trial didn't determine who gets the Oncoty[e test. It helped determine whether chemo was beneficial for intermediate scores. But it makes sense to read that your tumor was small enough that an Oncotype was not ordered. I have read that it is intended for tumors smaller than 5cm.
But here is the study you cited that showed that 97% of patients with T1bN0 stage 1A cancers had Oncotype scores under 25, so Oncotypes do not need to be done (but there is that 3%).
I had a tumor size of 9mm including clean margins. It was E+, P+ and HER2-. And stage 1A with negative sentinel node biopsy and fit the parameters for the OncotypeDX, which I had after consulting with two oncologists. Our situations seem similar. What made yours inappropriate for the OncotypeDX? If you're referring to that test as there are other Oncotype tests that tend to have similar names (and I find confusing).