Why is it that being HER2/neu+++ weighs in as a factor oncs mention when recommending chemotherapy, but isn't listed as a factor to be entered in any of the online self-help guides for choosing treatment?

I'm guessing because it's such a new prognosis factor to help with treatment? There really isn't any her2+ standard of care differences that I've seen yet (herceptin is still under study), expect maybe that Adriamyicin seem to work a bit better than some other chemos. I'll bet in 1-2 years it will be added to all of those sites.

Thanks, Rozebud. I sure haven't heard of anyone who turned out to be HER2+++ who received a treatment recommendation from an oncologist that didn't point them toward using an anthracycline. So clearly it is part of the decision-making process. It is deceptive not to include it as part of that process in the decision guides, particularly since anthracylines post some additional potential dangers.

Does anyone know if ASCO has ever made an official recommendation based on documented studies, or do we have to continue to rely on what each onc "thinks" and "recommends" when they aren't basing that on a consensus after considering what evidence there is?

A.A.

GREAT POINT!
Most of these sites have a FEEDBACK section. With some 25 to 30% of all breast cancers being HER2 positive they should be including this factor! Write up a standard message and send to them all when you get a minute.
I did find one site that I checked with but was looking in the section for patients with mets. It was there.

I sent feedback to 2 sites a while back... one was mayoclinic.com and I forget the other. I am hoping this site may be read by someone who can make a difference for us all (hint, hint, Joe et all!).

Push, push, push...

A.A.

AA,

We are sending a contigent of members to The San Antonio Breast Cancer Symposium in December. There we will be speaking on behalf of our members to many researchers, oncologists and pharaceutical companies.


Regards
Joe

Angel
When Dxed with her2+++, an aggressive bc, knowing you can take the herceptin can benefit your overall tx. and prognosis, by blocking that her2 gene from cancer progression . Statistics are now showing better survival for women with her2+ than women who don't overexpress her2. Herceptin has been a successful stronger tool for the Onc's to use in combination chemo tx's with minimal side effects. Alot of women previous to the approval of herceptin had a poor prognosis;and now we live with a better quality of life as well. Herceptin has been a life saver over the past 51/2 years and more in cinical trials in the late '90's.

Angel
When Dxed with her2+++, an aggressive bc, knowing you can take the herceptin can benefit your overall tx. and prognosis, by blocking that her2 gene from cancer progression . Statistics are now showing better survival for women with her2+ than women who don't overexpress her2. Herceptin has been a successful stronger tool for the Onc's to use in combination chemo tx's with minimal side effects. Alot of women previous to the approval of herceptin had a poor prognosis;and now we live with a better quality of life as well. Herceptin has been a life saver over the past 51/2 years and more in clinical trials in the late '90's.

Hi Christine,

I am encouraged by the progress that is being made with treatment too.

My questions about the online guides are a criticism from the perspective of being someone who has had several years to figure out what I wished I would have known when I was diagnosed (which is hardly uncommon). The online guides are primarily there to help women who are newly diagnosed. I feel strongly that the online guides could be improved by including at least SOME analysis for the 1/3 of bc patients who are HER2neu-positive and newly diagnosed -- perhaps not limited to discussion of the use of Adriamycin -- but I would suggest that there simply needs to be more coherence in the online guides for those women who are HER2/neu+. Many of these women do not have mets so Herceptin is not part of their picture, but for those who do, it should be part of their orientation through online guides/treatment tools.

If I can have input to the contact with the annual meeting of oncology specialists, that is one area that I think needs improvement. I think this is a good forum for making suggestions.

Perhaps some others could check out the online guides and make suggestions.

A.A.