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Genetic testing for breast cancer Revised guidelines
Breast Cancer | Last Active: Jul 26, 2022 | Replies (41)Comment receiving replies
First, I’m mightily impressed by your fierce self-advocacy and persistence. Second, your series of tests with often conflicting and/or equivocal results tell me (an overly anxious research nerd) that I made the right decision for me when I recently decided to forego the Oncotype.
For me, (and again only for me and women like me) such testing would have thrown up a wide, impenetrable barrier toward clear-cut, positive healing going forward. As someone with diagnosed osteoporosis, I’d already rejected AIs, and as a 71-year-old who works, travels the world and is entirely responsible for herself, I double-downed on no AIs and even no tamoxifen.
So it was radiation for me. I knew I wanted SOMETHING to bolster my lumpectomy, and I was told by my surgeon I did not require chemo due to the size and staging of my rice-sized tumor. And finally, something this gentle, pragmatic Hindu woman said resonated with me… “you don’t want to know what you don’t need to know.”
This is just me… lumpectomy last Friday, waiting on pathology results. Hoping/Planning for accelerated, partial breast radiation.
Replies to "First, I’m mightily impressed by your fierce self-advocacy and persistence. Second, your series of tests with..."
The OncotypeDX was very reassuring in my case. I got a low risk score of essentially 5% risk of loco-regional recurrence within 9 years if I didn't have chemo or AIs. @windyshores had a very different path with a more complicated cancer. IF my oncologist thought I had a high risk, based on his 30+ years as a breast cancer oncologist, I'd have had to factor that in but he was happy with, but unsurprised by, the low score as it matched the pathologists finding of the post-surgery biopsy.
I'm with @windyshores in thinking that the OncotypeDX would be worth having done.
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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!