Has anyone with low Oncotype score been advised to do chemo?

This is a really important question that many people face when reviewing their Oncotype results. While lower scores generally indicate less benefit from chemotherapy, treatment decisions involve many factors beyond just the Oncotype score, including individual medical history, tumor characteristics, and personal circumstances that only an oncologist can fully evaluate. It would be helpful to hear from others in the community who have navigated similar situations and how they approached their treatment discussions with their medical team.

Yes. My onco score was 16. I was confused that they suggested chemo and I refused it.

Good for you, Susan. There are way too many instances of over treatment. Chemo is a poison that should only be taken when the benefits outweigh the risks. We have to be our own advocates.

@susan h: does you recall why they suggested it?

Wow

Amy, my tumor was large. But I had dmx. I opted for radiation so I thought the chemo was overkill. I also lost 60 lbs, stopped sugar and alcohol and completely changed my lifestyle.

Susan, your situation sounds very similar to mine. My tumor was large, but my mammoprint, which I only got because I tried to get into a study trial, was .027 — low risk. I shouldn’t have gotten chemo, both because of my low risk mammoprint score, and because my cancer has the PIK3CA mutation, which limits the effectiveness of both chemotherapy and hormone therapy. Sure enough, the chemo did nothing. I literally progressed some on it, going from 2 positive nodes to 4. The PIK3CA gene mutation is very common in HR+ her2- breast cancers, about 40% of us have it. It has very significant treatment implications. Unfortunately, many oncologists paint by the numbers, merely going by staging for their patients’ treatment plans. This one size fits all approach fails too often, and is not how modern oncology should be approached. You gotta be your own advocate. Unfortunately, you can’t just put your trust in the medical establishment.

I also opted out of endocrine therapy, not only due to the unbearable insomnia, but also because of the PIK3CA mutation limiting its value.

I am also doing the metabolic diet, in order to keep my insulin from spiking, which could feed any remaining cancer cells. Cancer lives on glucose and glutamine.

Vicki, I totally agree that the one size fits all approach has got to change. Thank goodness for the all the information out there now for us! I have read so many books that have been extremely helpful. I also have not started endocrine therapy. My doctor is not happy about it and I’m not fully against it but I want to try to heal my body naturally first. I’m hoping to get the Signatera test done in January.