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I share your frustration. I was diagnosed 6+ years ago triple positive premenopausal. After going through chemo-induced menopause, I started on Tamoxifen (at that time, nothing else was available). After just a few months on Tamoxifen, I came out of menopause and have stayed out. At one month shy of 5 years on Tamoxifen, I recurred. At that point, my dr.'s first inclination was to start Lupron and use an AI with Herceptin to fight it. However, the tumor history had changed and was now ER-.
My overall experience with Tamoxifen was good (not great, but not terrible). The side effects for me were manageable. And I believe it helped delay the recurrence.
The drs. first thoughts are to stop the disease and QofL issues are secondary. While we all agree that this is paramount, as more of us become longer term survivors, QofL becomes more and more important. This will be a more reeducation process for the drs. As we all educate ourselves about the various possibilities, we can help educate the drs. about helping preserve our QofL - because we ARE going to be here a long time.
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