question on DCIS and HER2

harrie · 08-03-2009, 12:00 AM

For DCIS alone (with no invasion), is it usually not tested for HER2? What about hormone receptiveness?

sarah · 08-03-2009, 01:38 AM

as far as I know, tests include HER2 and ER, PR and other indicators.
I was tested for those, although back in the dark ages of 1999, they didn't give you Herceptin unless it was metastatic.
sarah

Becky · 08-03-2009, 05:11 AM

I had DCIS and there was not enough to test for Her2 but they did the hormones (highly hormone positive). I was concerned about lack of Her2 testing but it was also low grade. My onc said the high hormone positive and low grade were enough for him to at least think it was not Her2+. After 5 yrs, I think that was a good assessment.

Now a days, if there is enough tumor, they routinely test for Her2. They would have for me.

Ceesun · 08-03-2009, 08:12 AM

I had dcis, small 2-3mm and they tested it for her2 back in 2007 and it was not found.

Becky · 08-03-2009, 08:20 AM

Ceesun

Have you had problems with that small DCIS? How was it treated?

alicem · 08-03-2009, 11:43 AM

My original diagnosis was DCIS. It was not tested for Her2. It was only after a 2cm tumor was discovered in the mastectomy tissue that they tested and found that I was Her2.

Ceesun · 08-06-2009, 09:17 AM

The small dcis was found in the same area as the her2 tumor back in 03--surgeon recommended another lumpectomy and the oncologist advised mastectomy. I decided to go with the oncologist's advice. Ceesun

harrie · 08-08-2009, 11:09 PM

I had DCIS 1996 and again 2000. Both times was not tested for HER2. 2006 had the invasive DCIS and it wast tested and found to be elevated.

LoriE · 08-09-2009, 05:50 AM

My biopsy report in 2005 showed dcis and a 5mm invasion. The path report showed HER+++ and ER-PR-. It was all in there, but that part was given to me days after the first report. I still remember the nurse reading the path report with me and frowning a lot when she got to that part.

harrie · 08-09-2009, 04:08 PM

Lori, I know the situation and feeling all too well. For me it was my final visit with my oncologist before heading back home to HI from Calif. I knew my surgery results showed a small 6mm invasion of the DCIS, BUT the nodes were clear and I had my bilat mastectomy and did well. Everything I THOUGHT was DONE! BUT....comes the slammer...I distinctly remember my onc reviewing my path report...pause...and then saying...hmmmm, I see here from the FISH you are HER2 elevated, chemo would be a good idea. I never heard of HER2 at that point! The rest is history....
So many of us have been hit blindsided for one reason or another!

LoriE · 08-10-2009, 11:14 AM

My first onc never even mentioned the HER2 status and didn't even advise chemo. That's why I went for another opinion. My second onc explained all about the hormone status and the HER2 and set me up for A/C and Herceptin. The differences in onc opinions is amazing. and scary.