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My opinion....because 90% or so of Her2+ BC patients are Er/Pr negative, I believe that in the past, many of these patients got Tamoxifen or something similar, and as we now know, that type of med does nothing for these type of cells. Years ago, they didn't test for her2, but many of those women are probably the ones getting recurrences. Because there wasn't anything to prevent the recurrence! One of my friends was just diagnosed at stage 4/Her2+, after being NED for 12 years after a stage 1 lumpectomy. And she didn't know if she was Her2+ the first time, but my guess is: of course she was. So sometimes the recurrence takes awhile.
The only thing out there right now is Herceptin, and that's why a lot of us are getting Herceptin as our post-treatment med. We need a Tamoxifen-type drug for our specific type of cell. It remains to be seen whether or not the recurrences will be as likely with Herceptin as a post-med. When I enter my disease stats in the recurrence probablity calculators, it shows a 95% recurrance probability (but Herceptin isn't part of that calculation). But how long will we need to be on this med, and how long will our insurance companies pay for it if we are NED? 2 years? 5 years? And then how long will we have to wait for a recurrence after that?
This is not meant to be doom and gloom, simply the facts as I see them. I continue to have a very positive attitude about my condition, because I can't change it, so it doesn't make sense to lose sleep over it. But I am a realist too :-)
Val
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