her-2 positive statistics

I know the "recognition" of her-2 is relatively new, but does anyone have any idea of statistics for recurrence?

Eric
I am speaking as a nurse and as a BC survior with HER2 3+ and mets after 1 1/2 years from original diagnosis. From the looks of most of the people entering this site, it seems very common, and that is due to the fact that Her2 makes the cancer cells more agressive. It also seems to be an important factor whether or not the CA is ERPR positive or Negative. That is why constant vigilance is so important as to any new symptoms, not to mention regular check ups and scans. Catching any Mets early seems to be the important factor. If it does return or mets are found, early treatment usually gives a favorable outcome.
Sheila

Sheila: And from your understanding, it is worse to be ER/PR negative?

Do you have any links that will support this?

ERPR Neg is worse than being ERPR positive with the Her2 factor. Positive cancers feed off estrogen which they can delete by using Tamoxifen and other newer drugs. The ERPR Neg ones seem to be faster growing and there are no drugs to treat that except the Herceptin for the Her2 positive factor. Many other things are looked at like the s phase etc to determine mitosis and how fast the cells are dividing and spreading. All these things can be found on your tumor markers pathology report. There is some research that the FISH test is the most accurate in determining HER2 status but many Dr's and hospitals dont perform this test due to expense and availability.

Gene
I will look them up tomorrow and post them...I have done alot of research on every aspect I could find about HER2neu...even more so when I became a victim of the dreaded mets4 1/2 months ago...it hit me like a brick wall...I was feeling great, had just come back from working in Tennessee for 10 months as Site Nurse for the construction company I work for and in the midst of reconstruction I found a lump in my neck...I kept telling myself it was due to the reconstruction surgery I was going through...but the biopsy said different....the diagnosis was breast cancer mets to the supraclavicular nodes, HER2 3+...my "buddy" returned.

My surgeon told me it was worse to be ER/PR negative. Hugs, Sandy

My recurrence occurred also 18 months after original diagnosis. Am er/pr- and her2+3. The good news is those of us with her2+3 are the ones who seem to respond the best to herceptin. I think it is not "if there will be a recurrence, but when". The only thing that may change that is those who have been able to get herceptin with early stage breast cancer. Again, it will be a while before that trial will be able to show if this helps prevent recurrence or just delays it, and if it is safe to give with Adriamycin in particular. Keep in mind there are several vaccine clinical trials going on right now that may really prove to be successful. There is always hope around the corner so it is best to be vigilant and knowledgeable about all options available.

Kitty, your response of "if there will be a recurrence, but when" is precisely why I'm asking. My wife is also ER-/PR- and she will be going onto herceptin off protocol after radiation. Although I am thankful that herceptin is available I would feel more comfortable if she was taking it along with her chemo (did AC and now on Taxol), since it has been found to be more effective that way (in metastatic setting). Since she has been on a dose dense schedule (every other week rather than once every 3 weeks), she was not eligible for a herceptin trial and her onc was concerned with toxicity. I am searching for stats to help us determine how agressive we really need to be in preventing any recurrence. If it turns out that the odds favor no recurrence then the herceptin alone may be enough. If the odds are heavily stacked against her then we would push for something more. FYI...7 pos nodes, er-/pr-, and her2 overexpressed. Thanks, Eric

Hi - just went through asking this question with my oncologist. I am 39 with stage 4 her2 pos. b/c and have been on herceptin and taxotere for 10 months. They just added carbo into my treatment. When I asked about remission and reaccurance he said that "if you do" go into remission it's usually from 6 months to 1 1/2. Not what I really wanted to hear. I would love hear from someone else that has heard more possitive remarks.

FYI...7 pos nodes, er-/pr-, and her2 overexpressed

Hi -
this is exactly the same as my tumor and nodes info (I had 8 pos nodes). You do not say if your wife is overexpressed +2 or +3.
I only mention this as it seems to make some difference in success of treatment for mets. (I am +3 and had good results so far.)
Docs don't generally seem to want to talk stats with a patient unless pressed and asked to write them down in a way that means something to a patient.
Mine did not like the numbers game although gave me some data as I was in a trial with Taxotere early on. It did not work for me - I wanted herceptin, but there was almost NO way to get it 3 years ago. The trial was randomized and I said I would try the Taxotere trial to KNOW what I was getting on dx.
What I want to stress is that since we have no way to know how our disease will progress, but that there is a high liklihood it will progress, we need to change some things about our diets and exposure to environmental toxicity that may help. A lot of us have been talking about how to cut sugar on this board. As well as avoiding foods with added hormones that may stimulate tumors.
Many of us take a lot of antioxidants in several forms once we are off chemo. We do what we can to try and take charge of something that is sneaky and insidious. And we go on living our lives in as efficient a manner as we can. The spectre is with us, but we try to keep it as far in the background as possible.
Your wife is fortunate to have a hubby who wants to be of so much help. Maybe you can do some research on foods that have anticancer properties as well as going organic and building up her defense system.
Being healthy going into mets IS a big factor, should it occur.
We all pray that she will not have to battle more - but if it becomes necessary, she has some good allies.