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← Return to Tamoxifen and anastrozole
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What has happened to you is so wrong on so many levels. I told one of my oncologists that cancer treatment is a crap shoot. He didn't contradict me. It is frustrating that you could spend ten years feeling miserable on Tamoxifen and then get cancer anyway. I was put on 5 mg by an oncologist because I had such a bad time on 20mg. It scared me but when I asked to try 10 mg, he said, "You know what will happen." Well, I didn't. I just felt that he was sitting there waiting for me to get cancer again so that he could go into high gear and do what he does best. Treat cancer. I actually liked this guy in many ways but I switched cancer centers, going to a major one not far from my home state. The oncologist, there put me on 5 mg one day and 10 mg the next, so slightly higher than what you were on. He referred to the Italian study although like you, it isn't the same cancer as that study. It seems bizarre that your doctor would use that study to say you can't stay on a low dose and my doctor says I can. My doctor referred to the "baby-Tam" studies. You can look it up. It seems Tamoxifen has only been studied at the highest efficient dose, not the lowest. But they are starting to find that a lower dose for different breast cancers is just as effective. However, I have gotten a lot of contradictory information both about this study and how long I need to stay on Tamoxifen.
It seems it depends on which doctor you see.
The way I look at it, is I am doing the best I can with a low dose. My present oncologist tells me "low dose is better than no dose."
I might end up with cancer again but at least I will have had quality of life in the meantime.
It's the same for you. You need to live.
And it is distressing that you have had such a hard time seeing an OB/Gyn when you have a problem. You weren't just asking for a "well woman" check up. I'm in New England and I hear the same horror stories here. ER doctors complain that they are over crowded with non-emergency patients but it's impossible to get care from non-ER doctors so we're forced to go to the ER.
I 'm afraid this isn't going to help you much. I just wanted to reach out to you and let you know that you're not alone.
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Hi, Wellgirl,
Thanks for the feedback. I do think I may have misled you about the time I was "on" the adjuvant therapy drugs (although I re-read it and I think I put it down right.) Probably a mis-understanding. I was not on Tamoxifen for 10 years. I WAS on Tamoxifen, but only from April 23, 2023 until Aug. 30, 2023, at which point the side effects were so bad that I quit everything. I, too, wish my Texas oncologist had been cool with me taking a lower dosage, but I understand his point(s) about what the clinical evidence has shown to be effective. I have read about the "babyTam" studies and the 700 Italian women one, too. I, too, thought that (maybe) "something is better than nothing" but, quite honestly, I've given the pills (Anastrozole for 7 months; Tamoxifen for 5 months) a year of my life and I have failed to thrive while taking either one. Not only that, but putting me on an A.I. drug (Anastrozole) with my well-documented history of bone/joint issues and my over 20 years in the MOST study (nationwide study of same) was not only thoughtless, but almost criminal, as far as I'm concerned, since my left knee is never going to totally recover. When I read about how I should be out walking for exercise, I think to myself, "I'm lucky to be able to walk at all!" Despite that, I've lost 41 lbs., to date (Mounjaro and Ozempic) and joined a gym and am trying to be "healthy." I feel infinitely MORE healthy off the horrible pills I was told to take to "protect" me. (I often say I need protection from the protection!) I'm constantly amazed at how much conflicting information we are given and how profit-driven medicine seems to be today with YOYO (You're On Your Own) very much what I perceive the medical mantra to be in the 2000s. I'm hoping and praying that my Eternal Vigilance plan pans out for me. It's hard to get today's physicians/oncologists to even order tests, for fear of the consequences to THEM from Medicare. What is wrong with that picture? Everything.