1. < Breast Cancer

Anyone else blindsided by oncotype testing?

Posted by gemjaynes @gemjaynes, Oct 14, 2023

I knew my early-caught ER+ breast tumor and sentinel lymph node were going to the lab for testing after lumpectomy; my husband and I were thrilled with the all clear results, and we both thought that was it for the labs. Then I met with an oncologist I had never seen before (I thought I was there for a post-op check) who told me I needed chemo. I was too devastated and in shock then to follow what he then said about oncotype testing and my score. Oncotype what? Later on, looking at my records on the portal, I saw a form saying my tumor had been shipped off for the additional outside lab test. But I feel like an info ball was dropped somewhere. Anybody else experience this?

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mchler73 | @mchler73 | Oct 16, 2023
In reply to @auntieoakley "Yes, I just did a quick search and oncotype is used on DCIS. You might have..." + (show)
@auntieoakley

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?

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Thank you for the information!
I am not sure if it is necessary for my DCIS (my pathology said it was “extensive, intermediate grade, 3cm DCIS”)
I’m not sure how it is decided if an Oncotype test is needed?…..but I will definitely ask my Oncologist about it.

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1 reply
anjalima | @anjalima | Oct 16, 2023
In reply to @mchler73 "Thank you for the information! I am not sure if it is necessary for my DCIS..." + (show)
@mchler73

Thank you for the information!
I am not sure if it is necessary for my DCIS (my pathology said it was “extensive, intermediate grade, 3cm DCIS”)
I’m not sure how it is decided if an Oncotype test is needed?…..but I will definitely ask my Oncologist about it.

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Definitely ask your oncologist about having the tissue sent off for Oncotype. This test predicted no benefit for chemotherapy in my case but absolute benefit taking Hormone therapy ( anti) for 5-7 years.

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mchler73 | @mchler73 | Oct 16, 2023
In reply to @3dogngt "Make sure your insurance pays for the test....mine didn't! and no one ever asked me if..." + (show)
@3dogngt

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

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Good to know. Thanks!
What information did the test end up showing?

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1 reply
3dogngt | @3dogngt | Oct 16, 2023
In reply to @mchler73 "Good to know. Thanks! What information did the test end up showing?" + (show)
@mchler73

Good to know. Thanks!
What information did the test end up showing?

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that I didn't need chemo, only radiation and hrt. However, the test is $4k

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1 reply
mchler73 | @mchler73 | Oct 16, 2023
In reply to @3dogngt "that I didn't need chemo, only radiation and hrt. However, the test is $4k" + (show)
@3dogngt

that I didn't need chemo, only radiation and hrt. However, the test is $4k

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Yikes!! Dang, I wish they would have told you about it and that insurance didn’t cover it!

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joan23 | @joan23 | Oct 16, 2023

Hi! I just came from my oncologist routine visit, after the surgery and he told me that I might need to have chemo and radiation, as well. But I have to wait for those results from Oncotype. I was in shock since my breast surgeon told me that we the pathologist results from the surgery I didn't have to have no more treatments, but the oncologist told me something else. So, I have to wait now for those Oncotype results and see the outcome. But as of right now, I feel very sad! I understand your feeling.

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1 reply
hollyng | @hollyng | Oct 16, 2023
In reply to @frogjumper "When I first met with the oncologist before surgery she said they would run the test..." + (show)
@frogjumper

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 🙂

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Hi just curious was the Onco score high? Best to you.

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2 replies
gemjaynes | @gemjaynes | Oct 16, 2023
In reply to @hollyng "Hi just curious was the Onco score high? Best to you." + (show)
@hollyng

Hi just curious was the Onco score high? Best to you.

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27 for me.

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windyshores | @windyshores | Oct 16, 2023

There is an Oncotype for DCIS.

Many women have been spared chemo due to the Oncotype and unfortunately others find they need chemo, but at least you know it is of benefit. I might have had chemo with no benefit and only side effects because the test showed no benefit.

I don't think any of us should be told we are definitively
cancer free after surgery, or that they "got it all." If that were true surgery alone would be curative. It might be in some cases but there is no way to know.

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mchler73 | @mchler73 | Oct 16, 2023
In reply to @hollyng "Hi just curious was the Onco score high? Best to you." + (show)
@hollyng

Hi just curious was the Onco score high? Best to you.

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Is a higher score not good?

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