[MAVIS]

I posted this on the wrong thread and will try here. I am new to the Her2 group --- and not sure I even belong.

I will try to be brief.

Dx. IDC in 04 - 63 yrs. old, lumpectomy with wide clear margins, no node involvement, ER+ PR + over 90%, tumor size 1.4 cm, stage 1, grade 3 - 36 rads w/ boosts, took Arimidex for 5 years.... many se's so decided to go off, since the dr. left it up to me.

I was reading about Her2 because of a friend and saw there were numbers..... saw that 2+ is considered border line positive and should be verified by a FISH test.

I didn't remember any numbers so dug out my path report and looked. It says : HER2 = 2+ (negative) and there was a notation at the bottom saying this was in consultation with another dr --- who verified, (but nothing about a FISH test being done)

I called the dr. office and was told that in 04 a score of 2+ was considered negative. They said they would try to find out more info and call me back. They did call back and said that I was just on the edge of the time that they started using the FISH test and I didn't have one. The Onc. they talked to said that being 5 and 1/2 years out I was doing well......

My surgeon specializes in breast surgery and all the female drs. and nurses at this breast center go to him. He did not think I needed chemo - so he manages the BC. I never saw a Med. Onc.

I have been seeing the Rad. Onc. since 04 because of not having a Med. Onc. I talked to her about the Her2 and she told me the exact same thing.

I have done a little reading and find that it is way too late now to do anything about it...... but here I am for 5 years thinking I am HER2 negative and I've been at least borderline!

I've even talked to some ladies that were dx at the same time (different hospital) and their path report just says negative - no numbers at all! I almost wish mine had had no numbers or that I wouldn't have looked....... This had upset me a lot.

I don't even know what I expect any of you to say --- just wondering if any one has any input at all.

So far I'm doing well, especially since I'm off the Arimidex, just some mild LE in the arm and breast.... and very serious joint problems they tell me will not get much better.

Any thoughts would be appreciated from any one.
Thanks,
Mavis