A little Confused.

Faith in Him · 02-25-2008, 03:48 PM

I met with both the surgeon and onc today regarding my treatment plan. So far they want to do more chemo and then do the mastectomy. This is because the rash extends a little above the breast and that has to go first. (It is almost gone but not quite)

I asked that my receptors be tested again. This time they came back ER-, PR- & her2-. What?!! My onc thinks that I am still her2+ and this is an error. They do not believe that this is a new cancer and they are not considering it skin mets but instead similar to IBC.

Fortunately, I am going for a second opinion in two weeks. I wonder if I should have the receptors tested at another facility.

Any thoughts?

Thanks,
Tonya

Mary Anne in TX · 02-25-2008, 04:34 PM

Hi Girl!
I sure wouldn't want to run with an "I don't think"! I think your idea of testing somewhere else is good. I don't know what others will suggest, but for me, I'd want to be sure what I was dealing with! I know you must be frustrated, but it does seem realistic to take it step by step. I'm still praying for ya! Much love, ma

TSund · 02-25-2008, 04:51 PM

Wow, Ruth's changed after chemo, but you are having the exact same tissue tested?

TRS

Sheila · 02-25-2008, 06:01 PM

Tonya
Did they do an IHC or a FISH test on the tumor....alot was said in San Antonio about false findings from pathology reports...that many labs kind of make their own standards. You are dealing with alot, demand another test be run, somewhere different. If they did Fish, have an IHC or vice versa.

Joan M · 02-25-2008, 06:52 PM

Tonya,

I had a similiar experience regarding test results. And it's a good idea to have the test run in another facility.

When I had my mastectomy and immediate reconstruction, I was a ER-/PR- and HER2 3+ by the immunohistochemistry (IHC) test.

Two months later I found a small pea-sized nodule in my reconstructed breast, which was the same cancer. The nodule was removed (it was either something left behind during the mastectomy or seeding from the core biopsy, but I've never had a problem since). The nodule was the same cancer, but it was never tested for ER, PR or HER2.

A year after the nodule was removed, I decided I wanted it tested, just on the chance that it might be ER+, but was surprised when it came back HER2 2+ by IHC (rather than 3+) and then HER2 negative by FISH (many labs automatically test IHC HER2 2+ by FISH, because 2+ is considered inconclusive and FISH is used to make a final determination). The test was done in the same lab.

In the meantime, I had already taken almost a full year's treatment of Herceptin.

I had the original tumor tested again in the same lab and it came back HER2 2+ by IHC (rather than 3+, like the first time), and then negative for FISH.

My oncologist encouraged me to have the original tumor and the nodule retested in a large lab, so I went to Sloane Kettering and they tested the tumors, which came back HER2 2+ by IHC and HER2 positive but borderline (2.0) for FISH.

The oncologist at Sloan, Dr. Seidman, said it was better that I took the Herceptin since I was borderline.

I'm glad that the treatment is clearing up the rash.

Joan

Chelee · 02-26-2008, 12:00 AM

Tonya, I can't add much but I certainly agree with Shelia, & MA on this one. I would want to know "for sure" what your dealing with? For me personally...I couldn't rest easy with my onc "thinking" I'm still Her2 + & not knowing for sure? I say have it tested at another major cancer center...you know that is the only thing that will give you peace of mind. And I don't have to tell you this...but that's one thing us gals need when going through all this. I say get on the phone tomorrow and get this set up...then you can rest easier.

Hang in there.

Chelee