ROLL CALL ---- High risk oncodx and chose no chemotherapy
Just trying to find out if the following:
(People with hisk oncodx and no chemo)
Oncodx number
Number of years NED
Comments
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No chemo but did 4 years AI.
Oncodx 34
NED 5 years.
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For people high oncodx and chose no chemo
How long NED
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testing
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ok here is my post
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following
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34, year 10 ned
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Yay!! to 10 years NED. Nice to see you back Meow13!
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hello meow 13!!
What a strange year or so we’ve had! UK kind of opened up a bit now but who knows!?
Fantastic - 10 years!! Excellent
Anyway as you might recall I was in a state about having chemo as I’d been told I didn’t need it until my onco score of 30. I didn’t do it and it’s 2 and a half years out and ok. I’m thinking of coming off the hormone therapy as tamoxifen has caused thickening in womb lining and letrozole looks punishing!
It’s now clear that even with an oncotype score like that the latest studies show having chemo makes no difference and so we were right to question!
I hope you are doing ok and sending very best wishes to you across the pond!!! You were such a help to me will always be grateful…
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two and a half years:)
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I had an onco score of 44 and did chemo and 8 months into tamoxifen. I also do herbs from George Wong. My oncologist started me on 20mg, but I recently went down to 15 and am considering going down further to 10mg as I am really struggling, mentally and physically.
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10 years NED, fabulous! Following..
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34, on 11th year NED
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I would love to know also how many people who chose no chemo with a high onco score and how they are doing now. I have a score of 26 and I am choosing no chemo. ER/PR+, her2- Stage 1, 1.5 cm, grade 3 tumor. I start radiation next Wednesday.
update: 10 months out, mammo and lung scan both clear. I chose no chemo. I have been on letrozole since August and did a month of radiation.
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I chose no chemo. Felt obvious not to do it after much research. Onco score of 30. Estrogen positive. Stage1/2 grade 2
5 years now ok.
still anxious ! Good luck
sissy60
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Also a friend of mine just had a recurrence after 7 years - and her onco score was 8. She was led to assume she’d be fine. Oncotype isn’t definitive is it?
sissy60
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Hi! Oncotype 37. Chose no chemo. Instead ovarian suppression and AI. I'm 39 years old. Can someone please tell me what the current research is about chemo benefit and high oncotype? It didnt seem right to me to choose chemo. I am highly estrogen positive with low progesterone positive and a mitotic rate of 1. My oncologist today basically told me because I didnt choose chemo, I might not be here to see my 2 year old daughter grow up. I am beyond upset and scared :(
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Jenna, the current research still shows tremendous benefit for those with a high oncotype score. Breast cancer, before even being able to be detected by scan or touch, tend to shed through surrounding blood vessels. The more aggressive the tumor which is defined by a high oncotype, the more likely that is to have happened. Chemo goes after those errant cells killing them before they have a chance to attach to a distant organ and grow. Because at that point the cancer is no longer curable. It is up to you to decide whether the risks of chemo outweigh the rewards but your oncologist gave you an accurate assessment. There is no guarantee either way of course but those who have chemo if needed, statistically speaking do much better than those who don't.
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Thank you kaynotrealname. It's just frustrating when I have the surgeon, radiation oncologist, and medical oncologist telling me different things. The surgeon told me that in premenopausal women they aren't sure if the benefits of chemo are due to the damage to the ovaries or the actual chemo. Then the oncologist said I was making a reasonable decision to do ovarian suppression and an AI instead of just tamoxifen if I didn't want to do chemo. That's what I decided to do, and yesterday he told me to enjoy the milestones I do get to see with my daughter because my oncotype score suggests aggressive breast cancer.
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I see lots of people with low oncoscores having recurrences as well as people who did aggressive chemo regimens. And then I see women with high oncoscores who chose no chemo who are still years out without a recurrence. I guess there's just no guarantees when it comes to cancer.
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No there are no guarantees unfortunately. Just statistics that suggest what would be most beneficial. I had no lymph node involvement or LVI and an intermediate onco score that because I was under 50 suggested chemo was beneficial. I did it. It wasn't fun but I got through it and recovered fully. And I know if I had a recurrence I'd have no regrets. I think that's an important thing.
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"The surgeon told me that in premenopausal women they aren't sure if the benefits of chemo are due to the damage to the ovaries or the actual chemo."
I thought I should mention that this only applies to women whose oncotype score is between 21 to 25. For premenopausal women who score over a 25, chemo is always beneficial not because it affects the ovaries but because it kills aggressive breast cancer cells. I had a 23 score and still chose chemo though. I wanted to take as few chances as possible.
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Thank you so much for your reply and I'm so happy you're doing well and recovered fully from chemo. I've been told so many different things from my doctors I guess I am really confused. The surgeon said the mitotic rate showed it was slow growing, and if chemo is for rapidly dividing cells, I dont understand how chemo would work. I also don't fully understand the oncotype test. If it says greater than 15 percent benefit of chemo ... is that specifically for me or a whole group of people that scored high? And how many out of 100 people actually benefit from chemo with high scores? Thank you for your feedback
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Mitotic rate is subjective based on a lab person literally measuring. Different labs have different results. It's why most oncologists now base chemo on an oncotype score. And the 15% is for a group of people. No one can tell you what it will do for you personally. They can just tell you what it does for a bunch of people with your score.
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Thank you so much
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Hi @jenna1220x, and welcome again to our Community. We know understanding the risk and benefits of chemo is challenging, but you're receiving great information here. We wanted to also share with you this link you might find helpful from our site:
We hope this helps. Let us know how else we can support you!
—The Mods
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hi jenna1220x
did you do chemo or decided not to.0 -
@meow2024Hi! I did not do chemo. Despite my high oncotype score it did not seem right to me. I had a mitotic rate of 1. I have a 40 percent mucinous component and it can falsely elevate the invasion scores on the oncotype test making the tumor look more aggressive than it is. My single gene proliferation scores were not high on the oncotype test either. My oncologist initially recommended chemo based on a score of 37. When I presented all this information to him, he said I made a reasonable decision not to do chemo and my prognosis remains good, after telling me I had aggressive breast cancer solely based on my oncotype. I think its important that people look at their entire profile as a whole and not just one single test score when making treatment decisions. I also sought out a different oncologist, and he said even with a high oncotype, chemo would have had little benefit to me. The side effects would have outweighed the limited benefit in my situation. I have been on lupron and anastrazole for the past year and am doing well so far.
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