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Genetic testing for breast cancer Revised guidelines

Breast Cancer | Last Active: Jul 26, 2022 | Replies (41)

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@windyshores

I had double mastectomy, no radiation, and did 5 years letrozole (Femara, brand name). My risk of recurrence was 6% with tamoxifen on the Oncotype, and 12% without. Odds slightly better with AI's. I didn't have many problems on Femara.

My only message to you is that there was a discrepancy between my pathology and the Oncotype. The pathology results were much worse. So it was reassuring. I would not have done chemo anyway.

I also had osteoporosis when I went on AI's. I lost density the first year and then it leveled off. I am now on Tymlos (started at low dose and moved up).

I actually wanted to avoid radiation the most!

You may be fine with your plan. If the pathology is scary then you can always do an Oncotype on the chance that it is better!

You can access these tests long term because the labs keep your specimens, I got to know all the lab staff at 4 hospitals and I moved the specimens around!

We need to keep going in pursuit of answers and plans until we feel it is right to stop. Sounds like you are there! Good luck!

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Replies to "I had double mastectomy, no radiation, and did 5 years letrozole (Femara, brand name). My risk..."

I'm not sure how the 'pathology results were much worse' than the Oncotype. They are unrelated. Would it be fair to interpret your statement that the evaluation based on the pathologist's report suggested a cancer with a much higher recurrence risk than what Oncotype's genetic analysis of the tumor tissue reported back? That is, there was a difference of risk opinion between the clinical pathology profile of the tumor cells versus what the genetic testing suggested? I had a low OncotypeDX risk score. The Oncotype scientist told me that I had a really good result, no rogue alleles, no bad genes, no mutations. But I pointed out the irony is that I nonetheless had a 6mm tumor...