Recurrence now Metastasis in nodes. Her 2/nue pos or neg?

Sheila58

Hello folks. I was fist diagnosed in 2007 ductal carcinoma in situ er pos. I had lumpectomy and chemo. Found out radiation was not an option so I had bilateral mastectomy. I have lupus and doc did not want to radiate in 2007. 2016 I felt pea size node under left arm. Doc thought was nothing. Went for test. I had ultrasound and biopsy. I had surgery doc found 2 nodes er pos.carcinoma. Folled by 28 radiaton treatments. I still didn't feel right. Went for another ultrasound. The cancer marker still in place. So cancer still there. Second surgery cancer removed. IHC test came back HER2/pos 60 %, progestrone pos and er pos. The oncolgist had chemo all mapped out. The day bfore treatment. The nurse calls and said the 2nd test FISH was neg for HER2/nue. I have read when the pathologist send slides for futher testing, it can come back as false neg or pos. I'm not convinced it's neg. I read there is a blood test fot HER2. Any help would be appreciated. Thanks

dlb823

Sheila, FISH is the definitive test for Her2. If that's what was done and it was negative, then you are negative. However, I also believe in trusting our instincts, and if you have any concerns about what you are being told, then a second opinion would be the most logical thing to do -- just to be sure everything was done as represented to you, and nothing has been missed. Also sometimes just hearing the same information from someone who communicates a bit differently can also ease your mind.

Here's a page from the informational side of this website that might be helpful to you: http://www.breastcancer.org/symptoms/testing/types...

And here's a link to the NCI-designated cancer centers (the best of the best) if you feel a second opinion is in order -- probably not a bad idea anyway with a situation like yours where you've had a recurrence in the nodes after a DCIS dx -- just to be sure nothing is overlooked about your current situation. https://www.cancer.gov/research/nci-role/cancer-ce...

Beesie

Sheila, so sorry you are going through this. When you were diagnosed in 2007, did you have invasive cancer along with the DCIS? Chemo isn't part of the treatment protocol for DCIS, and wasn't even back in 2007. So if you were given chemo at the time of your original diagnosis, I'm thinking that you must have had some invasive cancer along with the DCIS. Having both together is actually very common, butsometimes you have to comb through the details of the pathology report to figure it all out.

Your original diagnosis is significant because if there was invasive cancer present at the time of your first diagnosis, that would better explain the recurrence in your nodes. A nodal recurrence would be pretty unusual for DCIS, unless there was a localized (in the breast area) invasive recurrence at the same time.

I can't offer any advice about HER2 testing, but I agree with dlb that a second opinion - and maybe a second opinion on the pathology - would be a good idea. You might find out something new, and if not, your mind will be eased.

Sheila58

Thanks Beesie for your reply. I was diagnosed with DCIS non-invasive in 2007. It was er positive. I have no clue about why the chemo.

KBeee

Sorry you have to deal with this again. I agree with the others that getting another opinion and an NCI designated center would be beneficial.