Anyone else blindsided by oncotype testing?

A doctor should have told you in advance about the Oncotype, which is now done on all ER+ HER2- cancers and determines whether or not chemo is of benefit. I am sorry you did not know about it. Get a copy of the report and read it carefully: there is a lot of information there. If you had a high score, it would help you to find out why. Was your ER% low? What grade was your tumor? The Oncotype report will tell you your risk with and without chemo and you also need to determine how much hormonal meds will reduce risk.

This happened to my cousin. She was actually initially told no chemo, which was not responsible in my view since the Oncotype had not come back.

I had the opposite happen: grade 3, highish ki67%, and mixed results for HER2. I also had lymphovascular invasion (lymph) , not good. But my Oncotype was low. This means chemo was of no benefit and maybe even more harm than good.

The fact that you had clear margins is great. But I have read that surgeons should not say "we got it all." Treatment is for stray cells with the potential to cause recurrence or spread. So glad your lymph nodes were clear!

I got 4 opinions and some retests. Keep going until you are sure of what you want to do!

When I first met with the oncologist before surgery she said they would run the test on my tumor. However, I was never totally sure I wanted the test run. My feeling was if the surgical biopsy came back no lymph nodes involved I was going to be done with treatment no matter the recommendation. Had their been lymph node(s) involved I still would have not had it done because I would have insisted on chemo. So to me the test was rather moot, My thoughts were if the number came back high I would spend every day obsessing about my breast cancer and treatment choices. I believe stress is a very strong inflammation trigger and I don't care what anyone says stress feeds cancer. I truly believe there is harm done with over testing. I also don't have an oncologist or radiation oncologist because I also turned down endocrine therapy and radiation therapy. My breast surgeon is not happy with my choices but I am and that's all that matters 🙂

Hello,
Is an Oncotype test recommended for ER+ PR+ HER- DCIS?
Or is that only for Invasive hormone+ cancer?

Frogjumper, A positive lymph node is not what determines whether chemo will be helpful. I had a positive node with extra nodal extension but the oncotype test determined chemo would not be beneficial. The oncotype test also showed an aromatase inhibitor would be beneficial. So, for me, without the oncotype test, I would have been over treated.
I wish you well with your treatment decisions.

I had a very similar situation. I had surgery for stage 1 invasive lobular cancer. My margins and lymph nodes were all negative. I really liked my surgeon, but she said no chemo, and radiation would be my choice. No one even mentioned an oncotype test, so I was blindsided when I saw the oncologist and she gave me the results of that test. My score was 29 which meant I would benefit from chemo. I wasn’t prepared for that. I’m having chemo, but still upset about the lack of communication.

I had the same experience: Loved my surgeon, was pronounced cancer-free, thought I was done except for maybe targeted radiation, then had the oncotype-chemo piano dropped on my head. It took me 6 weeks to recover from the upset. Even now my reports say, "No disease evident." I think I'll pass on targeted radiation if recommended. What is there to target? Also, my doctors seemed baffled by my shock and upset. A brief mention in a mountain of pamphlets does not cut it.

You are being heard, but I, for one, have no idea what the answer to your question is. I'm a cancer newbie myself. Plus, to paraphrase "Bones" on "Star Trek": "Damnit, Jim, I'm a simple truck-driving lawyer, not an oncologist!" I hope someone shows up here who has an answer for you, but in the interim I do not want you to feel ignored or not valued.

Lol. Thanks for your response. You are sweet.
That is ok, maybe no one knows the answer to that question….
I will ask my Oncologist when I have my appointment in a couple weeks.

Make sure your insurance pays for the test....mine didn't! and no one ever asked me if I wanted or needed the test.

Yes, I just did a quick search and oncotype is used on DCIS. You might have to ask for it.
I am sorry that some folks get blindsided by these tests, and they certainly should have been better prepared, but the ultimate decisions on treatment are still a cost vs. benefit decision between each of us and our doctors.
A test does not make all the decisions for you, but a great doctor who saved my life once said to me “the only good decision is an informed decision”. I wish this test were available when I was first diagnosed. Then at least I could have understood more about MY cancer. I feel more in control of the decision making process when I have more information.
Are you considering having this test?