Treatment Necessary with Low Oncotype?

Posted by sdbonniea123 @sdbonniea123, Jun 26 12:13pm

Hello – I have hormone positive HER2 negative Stage 1, Grade 2 with a Ki-67 of 15%. Just got the last piece of the puzzle back and my Oncotype Score is 9. I know this is pretty low so my question is: is there a point where all this treatment becomes overkill? I am prescribed 15 rounds of radiation to start on Wednesday, and meet with the oncologist Monday to discuss the hormone blockers. It’s hard for me to reconcile doing all these other things to my body when it feels like the tumor was quite indolent and probably doesn’t have the energy to do much. It all feels a bit like a game of chance, but I am curious about people’s thoughts on this. Thanks!

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Profile picture for sdbonniea123 @sdbonniea123

@celestebradham thank you for sharing. It’s interesting the strong reaction many women have to the AI’s, even though they’re already in menopause. That’s confusing to me. I’m sorry you had such a hard time.

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@sdbonniea123 I also refused the AIs. I am long past menopause at 69. In my case the "cure" can be worse than the disease. People do die from some of these side effects, instead of the cancer- stokes and heart attacks for instance. I had a low onco score, I was negative on a Signatera test, and yet they really push the AIs that made my hands freeze into a fist, hair falling out and horrible joint pain. So that is the reason women past menopause might not want to be on AIs.

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Thank you to everyone who shared their experience! I can't figure out how to update my original post so am going to just Reply and hope it works!

I did go to my oncology appointment yesterday. First time meeting her, since the sequence for me went surgeon, radiologist and then oncologist.

So basically she gave me my numbers and told me what my risk of recurrence was without and without medication. (5% with, 8-10% without). She said I have one of the most favorable breast cancer profiles and that any treatment for me is about lowering an already low chance and kind of "insurance." I feel very grateful and humbled by this outcome.

She did not sugarcoat the AI thing. But she also said some people do fine on it.

I asked her what she would recommend to a loved one and she said "if it was your exact situation I would tell them to do the radiation and then try the AI and if it didn't work I would not lose sleep if they decided to stop taking it." She said it my case that she did not come into the room with the prescription pad in hand knowing that she was going to need to give me the pills, which is not the case with many others.

I have decided to take her advice and do the radiation and then try the pills. If they are too hard on me I will stop and just pray that I don't fall into the 8-10%. I guess that's all I can do now. Oh, and enjoy life! Because if this has taught me anything, it has taught me that tomorrow is not promised and I need to stop sweating the small stuff!

Sending love and prayers for healing to everyone out there that is going through this and other cancer journeys!
xo

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Profile picture for sdbonniea123 @sdbonniea123

@dsaylor thanks for sharing and congratulations!! I think I am more hesitant to take the blockers than do the radiation. Will be meeting with oncology today to discuss recurrence rates and options.

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@sdbonniea123 just remember, there are many, many women who take the blockers, have no significant problems, are doing fine & are out living their best lives. I would urge you to at least try them & see for yourself.

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Profile picture for sdbonniea123 @sdbonniea123

Thank you to everyone who shared their experience! I can't figure out how to update my original post so am going to just Reply and hope it works!

I did go to my oncology appointment yesterday. First time meeting her, since the sequence for me went surgeon, radiologist and then oncologist.

So basically she gave me my numbers and told me what my risk of recurrence was without and without medication. (5% with, 8-10% without). She said I have one of the most favorable breast cancer profiles and that any treatment for me is about lowering an already low chance and kind of "insurance." I feel very grateful and humbled by this outcome.

She did not sugarcoat the AI thing. But she also said some people do fine on it.

I asked her what she would recommend to a loved one and she said "if it was your exact situation I would tell them to do the radiation and then try the AI and if it didn't work I would not lose sleep if they decided to stop taking it." She said it my case that she did not come into the room with the prescription pad in hand knowing that she was going to need to give me the pills, which is not the case with many others.

I have decided to take her advice and do the radiation and then try the pills. If they are too hard on me I will stop and just pray that I don't fall into the 8-10%. I guess that's all I can do now. Oh, and enjoy life! Because if this has taught me anything, it has taught me that tomorrow is not promised and I need to stop sweating the small stuff!

Sending love and prayers for healing to everyone out there that is going through this and other cancer journeys!
xo

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@sdbonniea123 totally agree! I tell everyone to at least TRY the hormone blockers & see! I'm taking a half-dose (10 mg) of Tamoxifen which helps protect my bones (I'm 72). Happy with this, so far! Wishing all the best to you! 😊

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Profile picture for jmab @jmab

@sdbonniea123 totally agree! I tell everyone to at least TRY the hormone blockers & see! I'm taking a half-dose (10 mg) of Tamoxifen which helps protect my bones (I'm 72). Happy with this, so far! Wishing all the best to you! 😊

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@jmab how long have you been on tamoxifen?

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Profile picture for brooklyn22 @brooklyn22

@jmab how long have you been on tamoxifen?

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@brooklyn22 I was diagnosed last Aug., lumpectomy in Oct., did the 5-day radiation in Dec. & started Tamoxifen on Jan. 1st, 2026! 6 months ago today. Only side effect is a slight weight gain around my middle section, so I started dieting & also doing 5 classes of Pilates per week. The Pilates experience has changed my life for the better! And I needed to slim down anyway. I have lost about 7 lbs & have 3 more to go. All this to say, the life changes I've had to make because of Tamoxifen have turned out to be very positive for me, overall! I'm in better shape now than this time last year, before my diagnosis! I hope you find a balance that works for you, too! 😊

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I had terrible side effects with Arimidex at age 74. After 2 months my oncologist said to stop taking it. With, recurrence rate is 3%, without, 5%. I would rather be able to do something besides go to the grocery store for the few years I have left; a trip to the grocery store did me in and I had to have my husband put the groceries away. Plus, a lot of hair shedding. I am still and probably forever now having to use daily foam minoxidil to get my hair back. I have a lot of new hairs now that are only an inch long, so it’s going to take a while to correct the damage that 2 months of Arimidex did. Plus mood swings, overall fatigue. Not worth continuing to take it. I am mostly happy with the mastectomy reconstruction and may do a revision surgery late this year if I recover well from my upcoming August knee replacement. One thing after another. And the fear of cancer recurrence will never go away. Age is not a blessing in that regard, as “age” is a strike against us, and for recurrence. No matter how small the %.

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Sorry you had a bad time with it. That’s crazy the damage it did in just two months! 💔 And I agree that with such a small percentage of recurrence that it’s not worth damaging the quality of life.
I’m trying to stay positive with that recurrence rate, regardless of age.
Thank you for sharing and take care!

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Profile picture for brooklyn22 @brooklyn22

@jmab how long have you been on tamoxifen?

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@brooklyn22 p.s. 1 more thing: don't forget that while people throw around all the statistics like 5% this, 10% that, those are guesses. Nothing more. And lifestyle (diet, exercise, weight) makes a huge difference, beyond any of the medical predictions! There is much that we can control about our own health! And that's a powerful thing!

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Profile picture for jmab @jmab

@brooklyn22 p.s. 1 more thing: don't forget that while people throw around all the statistics like 5% this, 10% that, those are guesses. Nothing more. And lifestyle (diet, exercise, weight) makes a huge difference, beyond any of the medical predictions! There is much that we can control about our own health! And that's a powerful thing!

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@jmab I agree with you that there’s so much we can do to control our own health. I can’t seem to lose any weight no matter what I do, but I walk 2 to 3 miles a day and I’m trying to watch what I eat. Also do some Pilates and yoga. As far as the recurrence rate these aren't guesses—they are highly calculated estimates based on scientific genomic testing. They are backed by years of clinical trial data, which is why doctors rely on them to tailor our treatments so precisely.

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