Anyone with an Oncotype score of 61 choose no treatment after surgery?

Posted by lmessinger1 @lmessinger1, Jul 25 11:10pm

I was diagnosed with HR+ HER2- Stage 3, Grade 3 breast cancer this past January. I had a unilateral mastectomy and 11 lymph nodes removed in March and my oncotype score came back extremely high at 61. I have chosen to forego the advised chemo, radiation, and numerous AI's recommended.
I am interested in finding anyone on this forum in a very similar situation (extremely high onco score and choice to forgo all treatment after surgery) to connect with. Thank you all.

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Profile picture for myoga @myoga

That sounds about right from the article I read. Appendix A does mention flaxseed
https://pmc.ncbi.nlm.nih.gov/articles/PMC7848814/

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@myoga
Thank you for this reference. Although it mentions flaxseed as something to be careful taking with an aromatase inhibitors, it may be flaxseed in supplement form. When I asked my PA about flaxseed, she said it is okay when taken as a food, but not as a supplement which I assume is in a greater concentration.

Please lmk if I'm mistaken since I've resumed using flaxseed with yogurt.

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Profile picture for worried1111 @worried1111

An oncotype score of 25 and over in post menopause means that the cancer tumor will most likely shrink with chemo. Any there is no lymph nodes that are positive there is a 95% chance it has not spread (pretty good!). Also, surgery is 56% of the cure and the most impactful treatment of all. I believe the chances of lymphodima are around 20% and less if you exercise. Radiation has the lowest impact but still helps by minimizing local recurrence by 5-10%. And finally the AI will reduce all recurrences of BC by 50% - major if you are stage 3. I am also stage 3 grade 3 and urge you to at least consider surgery. I had a double reconstruction and it looks amazing (better than before). I can understand not wanting to poison your body with chemo but your oncotype awfully high. Chem aged me and I can understand why you would not want it. Although I had 8 rounds of chemo and don’t regret it as it brought it brought my cancer down from grade 3 to grade 2 in aggressiveness. In fact I had all of the standard interventions but also use functional medicine. I really believe in the metabolic approach to treating cancer with a ketogenic diet. No sugar, no flour (zero grains), high fat. See Thomas Seyfreid the cellular biologist from Boston College. Apparently if you keep your GKI - glucose ketone ratio below 3 the cancer won’t grow because it feeds on sugar. Also see Maggie and Brad Jones on the Jesse Chappus Podcast. I test my blood every day with diabetic monitors that prick the finger to measure blood glucose and ketones. The objective is to keep my glucose low and ketones high by eating the appropriate foods. I also practice fasting. Nutrition and exercise are really empowering (these is clinical trials showing that ground flax seed is as efficacious as tamoxifen for instance). If you absolutely don’t want to do any of the standard treatments at least consider surgery as it will give you the biggest bang for your buck. There was a celebrity on the news recently who skipped all the treatments and is now dead. Best wishes to you.

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@worried1111
As someone who was diagnosed with invasive ductal carcinoma, grade 3 and a relatively high oncotype score, I am interested in the chemo bringing your cancer down from grade 3 to grade 2. That is such encouraging news. I assume they would need to somehow have breast tissue to test again so wonder how they could determine the change? Is there some special kind of biopsy?

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As I understand the Oncotype report, you get a score (29 in my case) and you get an estimate of risk of recurrence (18% in my case). Then you have to consider if you want to reduce the risk of recurrence. In your case, I'm guessing the risk of recurrence is high.

In my own case, I had surgery, radiation, AIs. My original cancer center did not do Oncotype of women over 70. I had to switch cancer centers to get it. Given my risk of recurrence, I'm now taking Kisqali (CDK4/6 inhibitor) as well as AI (exemestane now, anastrozole previously).

If you don't have a copy of your full Oncotype report, get it. If you don't understand it, there are BC non-profits that will review it for you and explain. Also, although a person may get very unpleasant side effects from radiation and/or AIs, many do not. I did not. But people like me don't post often about having nothing to report!

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Profile picture for prarysky @prarysky

@myoga
Thank you for this reference. Although it mentions flaxseed as something to be careful taking with an aromatase inhibitors, it may be flaxseed in supplement form. When I asked my PA about flaxseed, she said it is okay when taken as a food, but not as a supplement which I assume is in a greater concentration.

Please lmk if I'm mistaken since I've resumed using flaxseed with yogurt.

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@prarysky
I think you’re right. But there are articles that support the use of flaxseed. The links below is from wedmd
https://www.webmd.com/uterine-cancer/flaxseeds-and-cancer-warnings-what-you-should-know
“Enterolignans may also influence the type of estrogen you have most of in your body. The stronger form of estrogen (estradiol) has been linked to a higher risk of breast cancer. Studies in humans are very limited, but some suggest that in postmenopausal women, flaxseed consumption can lead to higher levels of a weaker form of estrogen (enterodiol and enterolactone). This form of estrogen is not linked to breast cancer growth. “

I think taken as food is fine. If you like it then that’s even better. I go by “everything in moderation”.
Wishing you a happy and healthy this holiday season.🤗

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Profile picture for peggydobbs @peggydobbs

As I understand the Oncotype report, you get a score (29 in my case) and you get an estimate of risk of recurrence (18% in my case). Then you have to consider if you want to reduce the risk of recurrence. In your case, I'm guessing the risk of recurrence is high.

In my own case, I had surgery, radiation, AIs. My original cancer center did not do Oncotype of women over 70. I had to switch cancer centers to get it. Given my risk of recurrence, I'm now taking Kisqali (CDK4/6 inhibitor) as well as AI (exemestane now, anastrozole previously).

If you don't have a copy of your full Oncotype report, get it. If you don't understand it, there are BC non-profits that will review it for you and explain. Also, although a person may get very unpleasant side effects from radiation and/or AIs, many do not. I did not. But people like me don't post often about having nothing to report!

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@peggydobbs
Thank you for your feedback! May I inquire your diagnosis and sugery dates? Also, have you had additional testing done since starting your group of AI's? If so, what were the findings? I understand that these are very personal questions and not everyone is comfortable sharing them on a public forum. Many thanks in advance, if you do.

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