In January, after a year of tamoxifen, a routine birth control consult led to the discovery that my estrogen (estradiol) level was way off the charts. This led to a regimen of blood tests and scans, revealing benign-looking ovarian cysts, a thickened endometrial lining, and a large asymptomatic fibroid that's been known for years and stable on imaging for at least five. I was referred to a gyn oncology surgeon in order to be in the best hands possible. She recommended a full hysterectomy to get rid of everything, as gyn onc surgeons probably tend to do when presented with an opportunity to be proactive. I asked for just ovaries and tubes to be removed but to hold off on the uterus if at all possible, as I wanted as short a recovery period as possible in order to be in shape for a family wedding. I woke up to find I still had a uterus and that the lining had looked good visually, hooray! So it was a downer to get the call a few days later that the pathology had revealed hyperplasia after all, boo. I was told to just schedule another D&C in the summer to see what would happen in the absence of tamoxifen and estrogen, as there was a good chance it would clear up. I had that last week, and got bad news: the hyperplasia is still there.There's a possibility a hormonal IUD might clear it up. but with my breast cancer history that's probably not a good option, and the best course of action is to do the hysterectomy and be done with it, especially since there's still a chance there's cancer behind the hyperplasia and a small chance there's enough of it to warrant further treatment. So that's the plan.
Meanwhile, I'm wondering what's ahead for my hormone therapy after this is over. I didn't like taking tamoxifen, as it gave me ferocious leg cramps and made me feel foggy, and was hoping Letrozole would be better. It hasn't been. The joint pain makes me feel and move like I'm 80 years old. I don't sit on the floor any more because it's too hard to get up. Exercise helps immensely, but I won't be able to do that while recovering from hysterectomy, and I'm afraid of how much ground I might lose in my joints and core strength, perhaps permanently, by the time I'm cleared to do any kind of workouts. And that's just the joint issues. It's impossible to know which problems are caused by letrozole and which are from the sudden loss of ovaries, but all in all, I'd rather be on Tamoxifen again ... if I can. The gyn surgeon didn't know, and I haven't asked my breast surgeon yet. It was obviously a very bad thing for my pelvic organs, but if they're all gone, maybe I can just switch back, and it will block whatever estrogen my body is still producing.
Just wondering if anyone has ever done this?
10/2018, IDC, <1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2-
10/18/2018 Lymph node removal: Sentinel
Prophylactic ovary removal
Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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