Just diagnosed as HER2+, but conflicting test results

Eleanora23

Hi All, I finally saw the MO and RO today for intial consults. MY HER2+ status was "up in the air" as the intial pathology based on FISH was HER+ but then the mammaprint test came back HER- I had a my initial breast surgeon state that I was HER-, based on the mammaprint being more sensitive than the FISH.

At my visit with the oncologist today, he said the the HER+ FISH result was the gold standard and actually due to that he never would have ordered a mammaprint (nor would be in the future order ONCA) as he has faith in the FISH assessment and is sure the HER+ status is good.

Clearly this affects so much of the treatment plan. He said give the HER2+ he is suggesting very strongly that I do chemotherapy. I am just wondering any others that could she light on this, have had similar experiences, or just know of good, solid links to advice about this. I am stage 1 at this point, waiting for a partial MX in a few weeks. (For some reason my diagnosis information is not showing below.

Thanks for your input and support.

Eleanora23

Maybe I should post this elsewhere, like an Her2+ thread?

SpecialK

Since you have discordant results, I would suggest possibly doing an IHC test for Her2 status prior to making systemic treatment decisions.  That way you would have a third result, a tiebreaker of sorts. It is important to note that tumors are not homogenous so it is also possible that the tissue submitted for the Mammaprint test was not as strongly Her2+ as the part used for the FISH.  Also FYI, if you have a test result showing Her2+ most docs would not order Oncotype as it is inappropriate for those who are Her2+, it is a test designed for ER+/Her2- patients.  Generally, anyone with a tumor greater than .5cm that is Her2+ is advised to do chemo with Herceptin.  Since your mass is small, it may be recommended that you have Taxol and Herceptin if further testing confirms Her2 positivity.  This is commonly used for smaller Her2+ tumors, here is some info that shows good results with this regimen for smaller tumors.  Below is also a link to a thread for those doing weekly Taxol, many with Herceptin.  Also, if you want your diagnosis and treatment info to show make sure you click on the public instead of private button in the profile area.

http://www.breastcancer.org/research-news/20140207-4

https://community.breastcancer.org/forum/69/topics/788735?page=1

phaila

you have similar stage as me. Diagnosed in December 1A tumor grade 2 at the time I was er pr positive. The onco just ran a oncotype Dx and now I'm suddenly er/pr negative. I was supposed to only have radiation and drugs and now I'm told(yesterday I need chemo:(

BarredOwl

Phala:

What was your Oncotype Recurrence Score ("RS")? The "RS" is the main output of the OncotypeDX test for invasive disease. That score is used to inform decision-making regarding chemotherapy.

ER and PR status determines suitability of endocrine therapy (e.g., tamoxifen, an aromatase inhibitor).

I recommend that you request a complete copy of all Oncotype test results for your records. It will include three things: the multi-gene Oncotype Recurrence Score ("RS"), plus an individual ER score, and a PR score.

Consistent with advice received by several members, this 2012 paper takes the view that, for purposes of determining endocrine therapy, immunohistochemical methods (traditional pathology) are more sensitive and preferred to the quantitative RT-PCR (qRT-PCR) mRNA measurements reported by Oncotype (GenomicHealth) as individual ER score and PR score:

http://www.nature.com/modpathol/journal/v25/n6/ful...

"The additional reporting of qRT-PCR ER and PR results on [the] oncotype report confuses clinicians and unnecessarily creates doubt about validated immunohistochemistry assays."

I am assuming that you were originally determined to be ER+ PR+ from surgical pathology, using a validated immunohistochemistry ("IHC") assay: Please check your pathology report and confirm this with your MO.

It is my understanding that the "IHC" determination from surgical pathology should usually control the determination of your ER and PR status, for the purpose of deciding endocrine therapy, so you are still ER+ PR+: Please confirm this with your MO.

Please ask what the separate multi-gene Oncotype Recurrence Score was and what the implications are for deciding the question of chemotherapy.

If your MO tells you that you are ER / PR negative based on the individual Onctoype ER and individual Oncotype PR score (even though you were ER+ PR+ by pathology), then please seek a second opinion from another MO, because that is not consistent with the advice that others here have received.

If you would like more input, you could start your own thread in the Chemotherapy section with the title "Use of Oncotype ER and PR Score?"

BarredOwl

Eleanora23

Special K (You are Special!)

I just started re-visting this thread and I am once again so grateful for all your information. I will indeed need to pursue the discrepancy, as all treatment decisions are based on HER 2+ or not. I am thinking now that when I get a biopsy from my lumpectomy (scheduled to see the breast surgeon tomorrow to hopefully finally schedule the surgery) that I can figure out an alternative lab to send the excised tumor to for another set of results. I will discuss this tomorrow with the breast surgeon.

Phalia, I am sorry to hear of your confusing and conflicting results. It makes everything so much more stressful doesn't it. I am curious as to what that next step is for you...another test beyond the ONCATYPE?

Moderators: Hi. I see that you often chime in the posts of newer folks like me to help guide us to the best spot to post here so any intervention is appreciated. THanks.

Eleanora23

I'm sorry phalia. It is hard to disgest all this new information and then when results are changed, it becomes even more frustrating,scary, confusing etc... Best wishes, Ellie