Tamoxifen + Ovarian Cysts + High Estradiol

Hi ladies,

I'm hoping to find someone who might have been in this boat before:

Age: 32 (finished chemo at age 30, got my period back in about 2 months, and it has been regular, but lighter than before).

I've been taking Tamoxifen for two years.

About 3 months ago (June 2017), I was diagnosed with gall stones and had a cholecystectomy (gall bladder removal). Because of that, I severely cut my intake of cholesterol. Ovaries need cholesterol to function, so my period went away again. After about 2 months of no period, I passed something fleshy-looking, but not bloody. Here, my initial thought was that maybe I had a miscarriage, but I'd had several negative pregnancy tests over the course of the past 3 months, so that didn't make sense.

Gynecologist did a transvaginal ultrasound and found 6 ovarian cysts of about 3cm each. He said all looked normal and are likely from the Tamoxifen (I read that 81% of us on Tamoxifen with periods will develop benign ovarian cysts). He said the fleshy thing might have been "debris" from the cysts. Gyny said to come back in 6 weeks, and if the cysts hadn't passed on their own, he'd need to surgically remove them. But he was pretty sure they'd go away. Note to anyone reading this, if you have ovarian cysts, just know that they hurt like the thunder of a thousand stallions in your abdomen if they burst, and that's generally a good thing.

HOWEVER, and here's the strange part, I just received lab results from the day my cysts were diagnosed, and my estrogen levels were astronomically high: 1,685 pg/mL. (Normal is anywhere from 12-500 for pre-menopausal women, if estradiol levels were consistent with my LH and FSH, which clock in in the Luteal phase, normal range would be 43.8-211).

My LH of 2.9 is within normal range for Luteal period stage (normal is 1-11.4)

My FSH of 1.9 is within normal range for Luteal period stage (normal is 1.7-7.7)

For first trimester of pregnancy, normal range should be 215 - >4300, but again, I'm not pregnant. HCG is <1

Both my oncologist and gynecologist don't know what to make of my high estradiol, and both don't seem terrible concerned about it. Tumor marker and cancer antigen levels were normal. (6.9 and 12.5, respectively).

My question is: Has anyone experienced anything similar and how did it turn out for you?

Thanks all, appreciate your time and support!

Hi everyone...I agree with MelissaDallas. However what concerns me is that your docs are not aware of this!

Hello!

I experienced the same thing. I am 6 years out of diagnosis, had 2 years of trenantone and 5 years of tamoxifen after chemo and got ovarian cysts last year. My Hormone Levels were also very high but all of this stopped when I finished the Tamoxifen. I took it for 5 years and stopped in February 2017.

My gyno told me that this often happens to young women because the ovaries react like this to Tamoxifen.

Hi,

ILC resulting in double mastectomy this past August and have been on tamoxifen ever since. I’ve recently been diagnosed w a 7 cm cyst on my left ovary that they are watching/hoping will shrink by my next ultrasound in 6 weeks. My oncologist wants me to stay on tamoxifen which seems counterproductive to having the cyst shrink. Has anyone had the cyst shrink and avoid surgery?