Oncotype DX and HER2+

Anonymous

Oncotype DX and HER2+

chocomousse

i know this type of test isn't necessary or standard practice for HER2 positives but I was wondering if anyone here has had it and if so, what was your score?

I was diagnosed in 2015 but asked my oncologist to have my tissue tested during my last visit which he agreed to after I pleaded for it. I really wanted to know my score. The results came back and my score is 63. I was told that it would be high as the recurrence rate for HER2+'s is high. We're not routinely tested because there's no gray area with us and it's not needed to guide treatment. So although I'm not sutprised and I'm glad to finally know, I'm still kind of freaked out about it.

pupmom

I didn't think they would test HER2+, since chemo is almost always recommended. Maybe it was because you had a small tumor?

chocomousse

They don't but I practically begged him for it, 3 years post diagnosis and surgery.

pupmom

Did you have to pay out of pocket? Can't imagine insurance would cover it.

chocomousse

My onc. didn't think it would be approved but it was. I have insurance through the ACA.

SpecialK

I had Mammaprint on a biopsy sample prior to the determination that I was Her2+ because my oncological breast surgeon was participating in a study with Agendia. My score was very high, as one would expect with a Her2+ tumor. I did not sign anything saying I would be responsible for any cost not covered by my insurance company in regards to this test, my insurance denied on the basis that, at the time in 2010, Mammaprint was an "experimental" test, without FDA approval. Oddly, they did cover the shipping cost of my sample to Agendia, but not the testing process itself. I called Agendia, requested an AOB form, they faxed it to me, I signed and faxed it back, and they accepted the shipping cost as payment in full. My understanding is that the OncotypeDx testing platform is not designed for testing of Her2+ tumors, not just that they don't do it because virtually all patients who are Her2+, other than those with microinvasion, receive chemo and targeted therapy.

pupmom

Chocomousse, that's awesome! Maybe some other members will follow suit.

chocomousse

I wonder what the average score for HER2+'s would be if we were eligible for testing. Although the range is 0-100, I don't know if 63 is considered exceptionally high or low for HER2+. Also included in my results was a quantitative single gene report. Those numbers are:

ER score 7.4 positive

PR score 5.6 positive

HER2 score 13.0 positive

This is is obviously different from a biomarker report.

chocomousse

So I called the testing service for a better understanding of my results and was told that they don't provide a recurrence risk for those who score high but have not received treatment. The recurrence risk score (based on the NSABP B-14 trial results) for scores over 50 only applies to those who have been treated with TAM or chemo. So someone with a score above 50 and treated with 5 years of TAM alone, would have a recurrence risk of 34%. That 34% number also applies to recurrence risk after 10 years for those who received chemo.

The quantitative gene report provides guidance on the type of treatment most likely to exert benefit. Based on my numbers, a hormone treatment would exert less benefit than a HER2+ treatment.

Maybe we should all be given the gene report test as it could spare those of us with low ER/PR scores from Tamoxifen and help better tailor our treatment too.