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Nov 10, 2017 08:39AM
There are several threads on BCO where people are discussing this question, and they tend to be supportive of people making a variety of decisions, depending on which forum they're in. People who have trouble with anti-hormonal treatment have a legitimate concern that's well-documented in medical studies, and we need new options with fewer side effects.
At the same time, people are more likely to post when they're having a problem. For example, a reader might think that jaw necrosis was a common side effect of AIs based on the number of posts here, but it's quite unlikely and my MO hasn't encountered it. Similarly, three gynecologists I've seen have never seen a case of Tamoxifen-induced endometrial cancer, but a friend did have it. This doesn't mean that the concern isn't important or the potential consequences aren't awful, but that the likelihood is low. Joint pain is an example of a side effect that's more common and warrants looking into because it can be relatively benign and just a nuisance, or more serious and harmful. The side effects of Tamoxifen and AIs are significant enough that some people stop taking them, but most tolerate them through at least a significant portion of treatment, if not all the way through a 5- or 10-year course. I'm not trying to minimize the side effects--I have several--but to say that some people can manage them and some can't, for a variety of reasons.
The risk of endometrial cancer from Tamoxifen is much lower than the risk of a breast cancer recurrence (metastasis). My perspective is that the side effects of anti-hormonal therapy may be more of a problem in the moment than breast cancer, but I'm less likely to die taking the medication than I am not taking it.
Tamoxifen decreases my recurrence risk more than my chemo or radiation did, so I'll take it as long as I can and do what I'm able about the side effects, including knowing that if it severely decreases my quality of life, I'll try a different solution (such as ovarian suppression and an AI; or quitting if there are no good options). I have fewer side effects from two generics than from the others, and my sister does better on a generic that causes me more side effects. It's worth giving it a try or experimenting.
Mutant uprising quashed.
1/2015, IDC, Right, Stage IIA, 1/1 nodes, ER+/PR+, HER2-
1/2015, DCIS, Left, Stage 0, Grade 3, 0/2 nodes
Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
Lymph node removal: Sentinel; Mastectomy: Left, Right
Cytoxan (cyclophosphamide), Taxotere (docetaxel)