Considering going Off Tamoxifen

Linda - I was on an AI, but was close to quitting it because of the s/e. My onc understood, and suggested as an alternative to quitting altogether, that I could take a one-month "vacation" from my AI, so that's what I did. Within a week or so of stopping the AI, the s/e began to recede, and by the end of the month, I felt pretty normal. The good thing is that when I started back up on the AI, the s/e remained mild for quite some time. It's like going off of it rebooted everything, and it took a long time for my body to work back up to the same level of negative s/e. Eventually, after a year or so, they were bad again, and I approached my onc about another "vacation." All in all, I ended up taking 4 one-month "vacations" during my 5 years on an AI. I never would have been able to get through my 5 years without those vacations.

Talk with your onc about exactly what benefit you're getting from tamox, then weigh that against your QOL issues. At a minimum, going off it temporarily may give you the break you need to clear the fog and plan your next course of action. During that time you can weigh whether the benefit you're getting from tamox is worth the severe QOL issues you're having. You can then resume it after a month, and if the s/e get bad again, then you can make your decision whether to stick with it, take another "vacation" or go off entirely. Your onc can be an invaluable source of advice, but the bottom line is that this is YOUR decision, not your onc's.

I think one reason my onc was so reasonable is that she is a b/c survivor, and did her 5 years of tamox herself, so she truly understood about the QOL issues. She admitted to me that she also took a few one-month vacations while she was on tamox, and that's the only thing that got her through it. Obviously taking it 5 years non-stop is best, but taking a month vacation here and there and staying on it most of the time is certainly better than going off entirely.

Mine was totally a QOL decision. Migraine auras without headache increase the risk of stroke in women, and since Tamoxifen carries a slight risk of stroke and I already had afib, I decided I'd rather risk a recurrence in my 70's than possibly be debilitated by a stroke. I agree with Natsfan that it's entirely your decision. Having worked in the medical field all my life, pleasing the experts never entered my thoughts. Spent too much time arguing with them over the years LOL.