Monday, April 15, 2013

You Wouldn't Think This Would Be So Hard

This recommendation on tamoxifen followup from the ob/gyn council confuses me. Basically it says to watch postmenopausal women on the drug carefully but to ignore premenopausal women who also take it.

Premenopausal women don't have problems with it, they say. Or they might say that endometrial overgrowth is expected and not to worry about it. Honestly, I'm not sure.

But either one of those readings doesn't bring me any comfort. I'm a premenopausal woman who had ovarian cysts--simple and complex--and an extremely thickened endometrium throughout my four years on tamoxifen.

Now, almost two years past stopping the drug a year early because of these problems, I still have them.

What does it mean? There is little to no information to help me understand this, it seems.

After burning through ob/gyns whose answer is to take hormones to regulate the cycle, I'm finally self-referring myself to my town's only gynecological oncologist to see if that doctor can shed any more light on what might be going on and what is the best course of action.

Taking hormones when my breast cancer responds to hormones is not the answer for me.

So we need another course of action, because all the research I can find says it's not a good thing to walk around with a constantly-building-up endometrium. If that doesn't indicate cancer today, it's at least a breeding ground for cancer to grow. Not to mention it has to be a sign of whacked-out hormones that I assume have to be affecting me on a daily basis in terms of mood and general functioning ability. And the fact that any period I ever do end up having is a tsunami that makes me immediately anemic.

This isn't a good way to live my life. So here you go, ob/gyns, this can happen in premenopausal women who take tamoxifen. I honestly cannot believe it is such a rare thing. But I guess if no one is watching us closely, we'll never know that. It will continue to be chalked up as "being near menopause" (all my bloodwork says I'm nowhere near that) or "a lingering effect of chemo," etc.

I'm looking for something better than that and a way to really deal with this.  

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