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 @joan23 "Hi! I just came from my oncologist routine visit, after the surgery and he told me..." + (show)
@joan23

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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That also happened to me. My Surgeon told me I had clear margins and no more tissue needed to be taken out after my lumpectomy and when I went to my Oncology appointment, he strongly recommended I have more taken out. So I went for my 3rd surgery in 2 months. But I did switch surgeons for my last one.
It’s definitely frustrating when you are told one thing from one doc and then are blindsided when meeting with another doc.

I might have missed this, but was your Oncotype test for DCIS? Or an invasive cancer?

REPLY
1 reply
gemjaynes | @gemjaynes | Oct 16, 2023

"Invasive" sounds scary, but it isn't necessarily. An "invasive" ductal carcinoma in my case means that it breached the milk duct, as opposed to a DCIS, which is still contained within the milk duct. "Invasive" did not mean that the cancer went everywhere. It didn't get to the sentinel lymph node. It turned up on my annual mammogram. Otherwise I had zero symptoms and zero risk factors: lifestyle, genetic, or family history. It was not there last year and was caught early. Stage 1A. HR+. 12 mm.

REPLY
1 reply
windyshores | @windyshores | Oct 17, 2023
In reply to @mchler73 "Is a higher score not good?" + (show)
@mchler73

Is a higher score not good?

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@mchler73 the lower the better. There are different cut offs for chemo based on age. Here is the site for a DCIS Oncotype https://precisiononcology.exactsciences.com/patients-and-caregivers/understanding-your-diagnosis/breast-cancer/breast-dcis-score

and for invasive cancer:
https://precisiononcology.exactsciences.com/patients-and-caregivers/understanding-your-diagnosis/breast-cancer/breast-recurrence-score
Cutoffs depending on age (for invasive):

Women over the age of 50
A score of 0–25 means you’re unlikely to benefit from having chemotherapy in addition to hormone therapy
A score of 26 or above means you’re likely to benefit from having chemotherapy in addition to hormone therapy
Women aged 50 or younger
A score of 0–15 means you’re unlikely to benefit from having chemotherapy in addition to hormone therapy
A score of 16 or above means your specialist will discuss your test result with you to help decide if you’re likely to benefit from chemotherapy

Here is a really good article:
https://www.cancertodaymag.org/fall-2022/chemo-or-not/

REPLY
2 replies
joan23 | @joan23 | Oct 17, 2023
In reply to @mchler73 "That also happened to me. My Surgeon told me I had clear margins and no more..." + (show)
@mchler73

That also happened to me. My Surgeon told me I had clear margins and no more tissue needed to be taken out after my lumpectomy and when I went to my Oncology appointment, he strongly recommended I have more taken out. So I went for my 3rd surgery in 2 months. But I did switch surgeons for my last one.
It’s definitely frustrating when you are told one thing from one doc and then are blindsided when meeting with another doc.

I might have missed this, but was your Oncotype test for DCIS? Or an invasive cancer?

Jump to this post

Hi! Mine is for invasive...

REPLY
1 reply
windyshores | @windyshores | Oct 17, 2023
In reply to @joan23 "Hi! Mine is for invasive..." + (show)
@joan23

Hi! Mine is for invasive...

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@joan23 the score cutoffs I posted above are for invasive. I edited to clarify so thanks!

REPLY
joan23 | @joan23 | Oct 17, 2023
In reply to @windyshores "@mchler73 the lower the better. There are different cut offs for chemo based on age. Here..." + (show)
@windyshores

@mchler73 the lower the better. There are different cut offs for chemo based on age. Here is the site for a DCIS Oncotype https://precisiononcology.exactsciences.com/patients-and-caregivers/understanding-your-diagnosis/breast-cancer/breast-dcis-score

and for invasive cancer:
https://precisiononcology.exactsciences.com/patients-and-caregivers/understanding-your-diagnosis/breast-cancer/breast-recurrence-score
Cutoffs depending on age (for invasive):

Women over the age of 50
A score of 0–25 means you’re unlikely to benefit from having chemotherapy in addition to hormone therapy
A score of 26 or above means you’re likely to benefit from having chemotherapy in addition to hormone therapy
Women aged 50 or younger
A score of 0–15 means you’re unlikely to benefit from having chemotherapy in addition to hormone therapy
A score of 16 or above means your specialist will discuss your test result with you to help decide if you’re likely to benefit from chemotherapy

Here is a really good article:
https://www.cancertodaymag.org/fall-2022/chemo-or-not/

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Thanks for sharing! Nice article!

REPLY
joan23 | @joan23 | Oct 17, 2023
In reply to @gemjaynes ""Invasive" sounds scary, but it isn't necessarily. An "invasive" ductal carcinoma in my case means that..." + (show)
@gemjaynes

"Invasive" sounds scary, but it isn't necessarily. An "invasive" ductal carcinoma in my case means that it breached the milk duct, as opposed to a DCIS, which is still contained within the milk duct. "Invasive" did not mean that the cancer went everywhere. It didn't get to the sentinel lymph node. It turned up on my annual mammogram. Otherwise I had zero symptoms and zero risk factors: lifestyle, genetic, or family history. It was not there last year and was caught early. Stage 1A. HR+. 12 mm.

Jump to this post

Yep, that's the same as mine via the milk duct.

REPLY
mchler73 | @mchler73 | Oct 17, 2023
In reply to @windyshores "@mchler73 the lower the better. There are different cut offs for chemo based on age. Here..." + (show)
@windyshores

@mchler73 the lower the better. There are different cut offs for chemo based on age. Here is the site for a DCIS Oncotype https://precisiononcology.exactsciences.com/patients-and-caregivers/understanding-your-diagnosis/breast-cancer/breast-dcis-score

and for invasive cancer:
https://precisiononcology.exactsciences.com/patients-and-caregivers/understanding-your-diagnosis/breast-cancer/breast-recurrence-score
Cutoffs depending on age (for invasive):

Women over the age of 50
A score of 0–25 means you’re unlikely to benefit from having chemotherapy in addition to hormone therapy
A score of 26 or above means you’re likely to benefit from having chemotherapy in addition to hormone therapy
Women aged 50 or younger
A score of 0–15 means you’re unlikely to benefit from having chemotherapy in addition to hormone therapy
A score of 16 or above means your specialist will discuss your test result with you to help decide if you’re likely to benefit from chemotherapy

Here is a really good article:
https://www.cancertodaymag.org/fall-2022/chemo-or-not/

Jump to this post

Thank you for the great information!

REPLY
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