Long term "high oncotype test" survivors
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My oncotype was 46. I felt a sense of utter doom as I read the report. I am now almost 8 years cancer-free.I have not visited this site in a few years but nosed around today. I didn't want to leave without giving someone hope!
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Hi,
My oncotype score was 51 and I had 3 positive nodes !! I had a lumpectomy, 4AC 12Taxol and 20 rads. Ive been on anastrozol for 3yrs, and it is giving me lots of bone pain, hair loss night sweats ETc. But Im 4years post diagnosis . I hope all my high oncotype pals are doing well.
Regards
Anne
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Hi how do you get this test? I had my surgery this month, finished my chemo, I don't know my oncotype. And why does my onco seem to not have me this test? When are you supposed to have this tested?
I had my genetic testing this month too, but I still have not heard about my results.
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Pneuma- I believe you were Her2 positive, as was I. They do not do oncotype for Her2 positive, because that type of breast cancer always gets chemo. The purpose of oncotype is for ER+/PR+ to see if they need chemo.
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Oh OK thank you so much. I wonder if I am eligible for the test now. before surgery I am ER+ PR- HER2+
After surgery I am NOW - ER+ PR+(1-5%) HER2 is equivocal so they did a FISH test and the result is negative. From my research it means I am now HER2-
I told my onco that and she still put me on kadcyla which is a HER2+ treatment. Her reasoning is that since my treatment started with HER2+ she's still treating it like it's HER2+. Like what the hell? From my research, it seems from my pathology result putting me on any Trastuzumab which is what kadcyla is, won't do anything.
I think I need to say something about this because I feel sore in both legs especially at night and when I stand up and walk I feel like an 80 yr old!! And that's only from my 1st treatment.
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hi all
I have been diagnosed in December 2024 and had surgery the same month. After my oncotype score 31 which is massive from what my oncologist told me, I decided to do ECT chemotherapy. I have done 6 out of 8 infusions.
I had 1/11 lymph node positive. IDC 18mm. ER8 PR8.I’m scared to have on a border 31 and greater. Any one have such score and doing well 🙏🏻
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@meow2024 Hang in there! I am six years out. Stage 3, grade 3, two lymph nodes and an onco score of 45. So far, so good. I did both chemo and radiation. The only lingering side effect that I note and that bothers me is the nerve damage from the Taxotere. In fact, I stopped treatment at six instead of the eight. The foot neuropathy is not fun. I was hoping it would get better but no such luck. I did the icing of my hands and feet. The hands are okay but the feet did not fare as well.
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I'm stage 2a grade 3, no nodes, oncotype of 37 😳 Did 4 rounds of chemo. I'm 4.5 years out. I still get paranoid about being high risk for reoccurrence. Had breast cancer index test recently and from what I understand, I will not benefit from an additional 5 years of tamoxifen and I'm moderate risk for reoccurrence from that test 🤷♀️ I also recently started having itching and pain at my tumor site the past couple of days and I don't know what that's all about because I'm 4.5 years out. Had bilateral mastectomy with reconstruction.
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I posted here four years ago, was very scared with an oncotype score of 61. Wanted to come back and say all is okay so far. Did chemo (CT) and radiation in 2021. Have been taking Anastrozole and will likely continue for ten years total instead of the usual five (just got the Breast Cancer Index Test results back on that). No evidence of recurrence, I feel good, and some days I don’t even think about this whole thing anymore. Someone up above (UpstateNYer) told me the dark days would pass and she was right—if you are reading this, thank you! If anyone else is reading this and nervous like I was, I hope this update helps.
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I had my last oncology appointment this afternoon. I'm done with treatment after my last bottle of tamoxifen. I'm just going to be an as needed patient. I had him go over the oncotype and peri-tumoral lymphovascular invasion again and basically chemo helps with that at the time but obviously there's no way to predict the future. I will not benefit from continued tamoxifen. He said even if I continue it's only about 1% benefit and the side effects and everything else that tamoxifen can bring could be worse than that 1%. So I will be done with that after this bottle is gone. I asked about the signatura test which is a blood test that can detect if you still have cancer cells in you. He does not necessarily recommend it because of false positives. Sometimes the blood work comes back positive but the scans will come back negative. I asked if I should have my ovaries removed and he said just wait that out and see what happens once you stop the tamoxifen. I still feel like I should have them out at some point. I asked him if I should continue to have MRIs and he said yes but to only do it maybe every 5 to 10 years. He said yearly blood work is fine and then obviously contact him if something happens or comes up. My reoccurrence risk is 10% which is on the high end unfortunately but again he's like I can't predict the future He's like the fact that you made it 5 years though without anything is a good thing.
For a reminder I was diagnosed at 37yrs old, stage 2a and grade 3. Bilateral mastectomy with reconstruction, 4 rounds of chemo and tamoxifen for 5 years. Oncotype of 37 and BCI of 10.
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Hi, so glad to have found this group, my oncotype score is very high 70… i have difficulty processing it. I do what I have to do, chemo is done so far :) first zoladex tomorrow, will start hormotherapy and ribociclib soon.
I'm 47, from Montreal, Canada. Sending light and good vibes to all of you.
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So glad you've found us, @lumiere! Thanks for posting and congrats on finishing chemo!!
Let us know what we can do to help. ❤️
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