Long term "high oncotype test" survivors

Congrats, Meow13. So happy for you.

ursaminor, Your diagnosis is similar to mine. My Onco score was 48. I did 4 rounds of C/ T. The good news is that chemo is very effective on those with higher Onco scores. I am 2 years out and still feeling fine and have had clear mammograms. That dark period in my life has come and gone and will for you too. If you have questions , please feel free to message me. Keep the faith👍 Pat

Hi Everyone,

so good to read such positive stories. I have an oncotype score of 51 with 40%recurrance risk with hormone therapy alone. ive done heavy duty chemo and radiotherapy after lumpectomy and i have been told my risk is reduced to 15%. At times this is very hard to take as i know that 15% is actually the best case scenario. Im walking everyday, getting fresh air and trying to stay positive. Im physically very well . Anymore good news out there.xx

Hi Murfy, no I'm er and pr pos, her2 neg. And grade 2, the score was totally different from what the pathology suggested. I'm going to see a genetic oncologist to see why I scored so high,? a gene issue. I also had 3 positive nodes. How are you doing on hormone therapy?

Yes, I will gladly keep you informed. My er was 100%, and my pr was 15% in my pathology report. I think it was less in the onco report, but was substantially pos. The score of 51 was a massive shock. My MO said that the hormone therapy was less effective for high score patients. Did you get any information. My surgeon said I was 100% fine, no problems, ignore the oncotype score, I can make long term plans. I think he's talking through his arse. He doesn't know anything about oncotype

I'm from Ireland, I live in Kildare, my pathology suggested luminal A, grade 2, though no ki67 result.Given the high score, I guess that was wrong. Anyhow I'll hang in there and hope that everything goes OK on the AI. Best wishes from Ireland. Does Murfy suggest an Irish connection?

Lol, as did many fine Irish men, the great famine killed many more, he was a very lucky man. 🍀

I would have to wonder too about your oncologist saying ignore the Oncotype score. It’s a barometer oncologists use to determine whether chemo is helpful and a kind of snapshot to what the odds are of a recurrence. Certainly it’s not foolproof but for the most part it’s pretty accurate.

I had the test done and had ascore of 11. I will be 10 years out next month God willing. 8% chance of recurrence. No guarantees but certainly encouraging. I might consider getting a second opinion.

Diane

This is the Oncotype formula:

The issue I have with Oncotype scores is that they are based on averages and none of us are average. For those who receive scores based on the 2018 TAILORx study, the average tumor size was 1.75 cm and the average grade was 2. So someone with a substantially smaller or larger tumor, or someone with a grade 1 or grade 3 tumor, is not 'average' and the results will vary.

A more personalized recurrence risk is now available using the RSClin model (which has replaced the previously available RSPC model), which every MO can access on-line. This takes the Oncotype score and applies 3 factors - the patient's age, the grade of the tumor, and the size of the tumor - and recalculates the recurrence risk. The results in some cases, in terms of 9-year metastatic recurrence risk, can be significantly different than the generic results that everyone receives along with their Oncotype score. While the RSClin model is new, there are quite a few people on this site who have had their chemo decision changed because of their new risk from the RSPC model.

Can you tell me how to request single gene Oncotype scores? I see an email address for Genimic Health at the bottom of my report. Is that how I can request it

Hi everyone,

My Onco score back in 2019 was a 48, Er+, Pr+, her2-. I was told I had a 37 percent chance of recurrence with AI's alone with no chemo. My MO did the RSClin score and told me the following taking into account my Onco score, age, grade, and tumor size.

Individual recurrence risk at 10 years with No Chemo:

31 percent (95 percent cl: 19-47 percent)

Individual absolute chemo benefit:

24 percent ( 95 percent cl: 7-40 percent)

This new score gives me a few percentage points lower for recurrence, which made me feel a bit better knowing this information. Also, glad I took chemo and rads, knowing how beneficial they were in my case.

Hi Emily,

Yes, this stuff is very scary. But, our scores being so high means that studies show that we benefit greatly from taking the chemotherapy. Looks like you did all you could to get rid of the beast. Being scared is normal, but should ease up some over time. It did for me. Take time to be good to yourself and make time to do the things you enjoy the most. I am doing very well on anastrozole going on 2 years now. Feel free to private message me if you wish.

All the best,. Pat👍

Dear all,

Are any of you having conversations with your MOs about the possibility of blood tests that pick up cancer-related DNA fragments early and potentially offer the opportunity to avoid metastatic disease through early treatment (say, by resuming hormonal therapy)?

For example, see https://news.harvard.edu/gazette/story/2020/03/per....

This technology has been on the verge of becoming reality for years now, and since you all are associated with medical centers around the world, I was wondering if you are hearing more about it in your respective centers.

Thanks!