What is the major concern with being Her2+++, is it that recurrance is high or is that the original cancer may have or will metastize?
Do people with Stage 1, Her2+++ with high grade (3) get recurrance or develop mets making the new diagnosis Stage IV?
I've been told that after I finish (1 year) of herceptin there is nothing to give to keep bc at bay. I'm ER-PR- but Her2+++.
Thanks

Hi Donna,
My story goes like this.....I was diagnosed the end of Jan '05. had a lumpectomy with a sentinal node biopsy of which 2 nodes were removed and came back negative. I was stage 1, ER-PR-, Her 2+++. Since I was Her 2+++, I underwent 4 rounds of A/C and 4 rounds of Taxol with herceptin and continued weekly herceptin. A week before I was to begin radiation, I found a new lump in the same breast....had all tests....not only was it back in my breast but it had spread to my lungs. Talk about disheartening....going from a stage 1 to a stage IV in a heartbeat ....I'm only 40 and have 2 young girls of whom I will have to worry about breast health sooner rather than later in life, and I prefer to be here to help them through that process. Anyway, now I am taking Xeloda plus Herceptin with lots and lots of prayer. My regular Onc didn't want to put me back on Herceptin for obvious reasons, but I went to a specailist and she said it wouldn't hurt to try it again in a different combination. (She's probably aware of the psychological attachment those of us who are Her2+++ have to Herceptin). It's a continuous troubleshoot to figure out what will work to keep this beast at bay.
Sorry, this was probably more info than you wanted, and I really didn't provide you with any answers. Just know that you are not alone in this struggle...that seems to help me....knowing that there are lots of incredible women who can relate to exactly what we are going through... fears, desires.....emotional challenges not to mention the physical ones. I wish you luck and God Bless, Amy

When I asked my onc the same questions after I was diagnosed, he said that being Her2+++ increased the risk of recurrence by about 10%. This discussion did take place before herceptin was being used for early stage bc, so I think that % is probably lower now. I think Her+++ bc also comes back sooner. He did assure me that there are many women who are Her+++ that have never had a recurrence. Hope this helps! laurie

I think the real answer is, they do not know. They do not know who is goint to recur or not. why did Amy recur being stage 1 and i had 34 pos nodes and its been 2 years? My onc told me that there is something in my tumor, which they don't know yet what it is, that might be there not letting it spread, yet that is. I think that Her2 is just ONE of many factors in the big picture, which we don't know yet. some day they will have all the answers, but they really have no clue now

Amy, I'm curious, had you had any scans or chest Xray to rule out the other lump or lungs?

I think Michelle's right. We don't know for sure. Remember there are other factors in your pathology than just er/pr and her2. It would seem, however, that being HER2+++ is a major factor for mets. I asked my onc, just last week, "Have you seen increased longevity in bc patients since Herceptin?" His reply, "OH, definitely."

But even Herceptin isn't a do-all, win-all. At least 1/4 of the women on Herceptin (and my doc says higher), cannot fight the battle with Herceptin alone. Take me, for example. For the past 2 years, I've had mets in various places. I've been on Herceptin continuosly and various other chemos added. Yet those cancer cells keep on marchin.

I suppose if there were a single answer, we wouldn't need this terrific support site.

Love and light,

Lisa

Ok Lisa, that scares me. You have been on herceptin, yet you keep getting BC back. I don't ever want it to come back. I was dx on 4/5, did 4 rounds of a/c and 2 of 12 taxol with herceptin, so far. Than I have 30 rads, then 40 more weeks of hercetpin. I had idc, no node involvement, not lympatich involvement. Tumor was er pr and her2 neu positive. So it just breaks my heart hearing that we can still get it back even after all this poision we have to put in our body. God enough is enough. I refuse to let cancer come back. Once is enough. That is how i'm going to think, right wrong or indifferent, I have had enough and given enough of me to cancer.

sorry just hate hearing that it could come back.

Cheryl,
Yes, I did have a chest x-ray prior to my lumpectomy....came back clear.

Randi,

I love your attitude! You go, girl.

Love and light,

Lisa

Randi,
All that being said what we do know is that this whole thing is a crap-shoot, right Lisa? I feel that, contray to some medical beliefs, there are ways to minimize re-occurances. Diet is a big one, oleic acid (olive oil and flax seed oils), curcumin, CO-Q10, IP6, Grape seed extract, green tea to mention a few. I think there are certain suppliments that fight HER2 cancers and should be taken religiously!
Note I said HER2 cancer and NOT breast cancer; as I believe that HER2 cancers are in a realm of their own.
Take care,
Al