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Oncotype Test

Breast Cancer | Last Active: Sep 30 2:43pm | Replies (23)

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@einnoc

When my 11 mm. tumor was discovered on Dec. 7, 2021, I asked my oncologist about having an oncotype. I had never had anyone with breast cancer among my family or friends. I was ignorant of anything involving b.c,, but I did have the genetic testing, which showed no sign of BRC 1 or BRC2. I accepted it when he said, "You don't need one" to my inquiry about an oncotype. If, as you say, insurance wants the tumor to be bigger to justify having one at all, perhaps that was his reasoning, but I can tell you, from my own experience, that it has been standard of care since 2013 and everyone seemed to have one but me. An oncotype is used to plan your treatment and it also gives an idea of what your odds for a reoccurrence are after surgery. I did not have chemo (because I did not have an onco score) but, after my lumpectomy, I was very apprehensive about a recurrence. My surgeon suggested I ask my oncologist for a ki67, which would have given me that information, but, I found out that my oncologist never wanted to order anything expensive "for fear he'd get dinged by Medicare." He also didn't do much homework on me as a patient, because I was in a clinical trial for osteoarthritis from 1997 to 2020 (the MOST study) and that, alone, should have indicated that A.I pills were going to put me into agony by inflaming my fragile joints (I have 2 that I injured in a bicycle and volleyball accident). I had terrible side effects from Anastrozole and, later, from Tamoxifen, and my left knee actually blew out from the Anastrozole and put me in a wheelchair for 6 months. You mention having dense breasts and anyone who has dense breasts, like me, should read this:
https://mydensitymatters.org/programs/my-story-matters/
I asked for and got an oncotype from my Texas doctor after I flunked a HerScan that I paid for out of pocket on the 1st anniversary of my lumpectomy (1/27/2023). I wish i had insisted on an oncotype at the outset, because my score was 29, where above 25 usually indicates cheno, but I did not have that because it took fom 2021 to 2023 to find a doctor who really paid attention to me and my side effects. When I told the Illinois doctor about the brain fog, teariness, mood swings, excruciating back and joint pain, insomnia and vivid violent nightmares, he simply said "Don't take it then" and walked out. When I asked about the ki67, he said, "I won't order that for you. You'll have to get someone else." I would recommend that you fight for the onco score so you will have the peace of mind that the % of recurrence gives you, In my case, I had to stop all of the adjuvant therapy drugs, even though my odds of recurrence are 36% because I cannot tolerate them and now, at 79, I want to enjoy the rest of my time on the planet.

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Replies to "When my 11 mm. tumor was discovered on Dec. 7, 2021, I asked my oncologist about..."

I stopped as well! I’m 73 and the Anastrozole was awful. Once I got trigger finger in 3 fingers I stopped. So painful I had to get a cortisone shot! Waiting for a bone scan. I know it kicked me into osteoporosis. They also told me I didn’t qualify for the test either. I’m now feeling better still a little brain fog and joint pain. Nothing like when I was on the pill. I’ll take my chances and 🙏🏻🙏🏻. Best wishes to you 🤗

Thank you for sharing. I am shocked at your oncologist's treatment and handling of you. Too bad you couldn't have found a second opinion. I hope you are enjoying your life. I couldn't tolerate the AI's either nor tamoxifen. I tried them as much as I could for nearly 2 years. I am living my life, too.

My Oncotype was 29 and I didn't do chemo. The Oncotype score for me was totally unexpected and so I also did the Mammaprint and the Mammaprint came back as low risk. I've had 5 doctors tell me they would not have ordered the Oncotype either because I think the initial research was done on people with a tumor of 1cm or more and mine was 8mm. So here I had an Oncotype of 29 and a Mammaprint of low risk, a ki67 of 1%, yet I had a higher Oncotype score of 29. I saw 10 different doctors to get an opinion on whether or not to do chemo with a Oncotype of 29 and they all independently said no. The Oncotype was the outlier and didn't seem to fit with my prognostic values and the Mammaprint so I made the decision of not doing chemo. I will never know if I made the right decision and it still haunts me, but I think the Oncotype is only one thing to consider along wth your other prognostic values. Subsequently the RSCLIN model was published and ironically it too said I was very low risk and I am pretty sure this model was published as another way to take your Oncotype score plus your prognostic value to give you an overall risk. You may want to ask your dr to run this model for you. They could do it in 60 seconds since it is only inputting a few numbers into a model. Its not something you can do on your own, its only a model released to doctors.