Her2+ and recurrence

[LisaS]

Just wondering if anyone knows the stats about being Her2 and having a recurrence? I know it is considrered to be a high risk, but is it closer to 20%, 50%, or 90% higher? I talked to one friend of mine and she said when she found out she was Her2+ she felt like it was only a matter of time when she got a recurrence, not if she would....

Any thoughts?

Lisa

[Kristen]

Hi Lisa S,
I was told since I was stage 3b and it was high grade and had lymph node involment that my risk of reoccurrance was 50-50. My radiation onc said from what she has seen IF it comes back it is usually within the first 2 years. Now my old Onc. told me I was getting the best treatment out there (her opinion) I had carbo, taxotere and herceptin and she said I was at the same level of reoccurrance as women with er/pr +. My friend has stage 1 and it scares me because she is not getting herceptin. But then she also had A/C and taxotere which is suppose to be the best for you with no node involment. (this is all hearsay, no proof)
This is all conjecture, no one has any proof or studies about prognosis. If they give you one, what is it based on? Experience? Herceptin is our tamoxafin and some of us only get it for one yr. and as far as I know Genentech hasn't released any study documentation. If you look up there site, they will tell you, you have a poorer prognosis in met bc, nothing on first time bc patients. I didn't find any statistics. I could be very wrong and haven't found a site.

This subject has been brought up many times and when you actually confront your Dr. or surgeon, they will tell you they don't know, at least mine did. So I don't put much faith in prognosis. I looked up many sites and they all were different.

As many women on this board have been NED for a number of years after tx. and other reoccured during or shortly after the end of treatemnt. No one is the same and I think the same goes for women who aren't her2+/ but they have the added drug Tamoxifen, which I know women on that didn't make 5 years and reoccured.
Sorry this is so long, But if any one out there can find a site that does tell us our prognosis I would love to look at it. Good question, I wish we had the answer. I don't know what stage your friend is in, starting tx or what, but in the beginning I wondered also and after trying to find some info, I just gave up and said mine wouldn't reoccur and am trying to start living again with out the fear. lol take care K

[lauren]

I have asked my doctor this, and she says that it is absolutely NOT a foregone conclusion that we will recur, especially now that herceptin is being used more and more in the adjuvant setting. She wouldn't give me percentages because she felt it was too complicated with all of the other factors that get mixed in (to name a few: hormone status PLUS her2neu status, whether the patient took herceptin, what else the patient took WITH the herceptin, number of nodes positive versus number of nodes positive on a non-her2neu positive patient).

She did say that her2neu positive patients tend to present with more lymph nodes positive, and that would make ANYONE more likely to recur. Again, it is hard to factor out the other factors...

[Ruth]

I am not sure the percentages of recurrence either. I was just told that I was high risk and I didn't get in any further than that. I don't want to worry about numbers too much because at least I know it is not 100%!
I did find on an abstract from the clinical trials using Herceptin for earlier stages that they hope to have a 7-8% improval in disease-free survival. You can find this kind of information if you read the documents on the purpose of the trial and what it hopes to achieve.
Peace, Ruth