Topic: Tamoxifen + Ovarian Cysts + High Estradiol

Forum: Young With Breast Cancer — Connect with those under 40 who have been diagnosed.

Posted on: Oct 2, 2017 09:17PM

Posted on: Oct 2, 2017 09:17PM

TCB29 wrote:

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!



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Oct 2, 2017 09:47PM melissadallas wrote:

I believe tamoxifen elevates your "free" estradiol because it keeps it circulating by preventing it binding to your estrogen receptor cells

LCIS, extensive sclerosing adenosis, TAH/BSO & partial omentectomy for mucinous borderline ovarian tumor. Dx 5/20/2012, LCIS, Stage 0, 0/0 nodes
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Oct 3, 2017 08:59AM dtad wrote:

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

Dx 3/20/2015, IDC, Left, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Dx 4/10/2015, ILC, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Surgery 5/21/2015 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Oct 3, 2017 09:40AM gb2115 wrote:

I agree with the above, if you look up the mechanisms for how tamoxifen works, it'll tell you it raises estradiol levels. Tamoxifen was originally being looked at as a fertility drug, and <<I think>> (correct me if I'm wrong), estradiol is critical to ovulation and implantation, so it would make sense that it raises levels. It also has the benefit of preventing estrogen binding to the receptors on tumor cells, hence why it's widely used in hormone positive treatment.

I only get hot flashes during the ovulation part of my 6 week menstrual cycle---at least thus far. I believe it's because my estradiol levels are probably really high during that time. I am not particularly worried about it though. I have my first gyn appointment since diagnosis later this month, so hopefully nothing weird pops up there. I think I experienced a bursting cyst back in the late spring. I was going to go in if the pain didn't go away (it was in the evening and I'm not one to run to the ER), but it did go away after a few hours. It hasn't happened again.

Dx IDC in Oct 2016, stage 2A, 1.2 cm ER/PR+ Her2-, Grade 2, 1/3 nodes. Mammaprint low risk luminal A, Lumpectomy + rads + tam. Age 38. 5/21 Dx IDC. 1.3 cm ER/PR+, Her2 -. Gr 2. Age 42
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Dec 14, 2017 04:53AM Moonflower83 wrote:

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.

Dx 8/26/2011, 1cm, Stage IB, Grade 3, 0/8 nodes, ER+/PR+, HER2-
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Mar 1, 2020 08:00AM Nili wrote:

Hello all,

I am glad I found this topic. I was diagnosed with BC in 2016. My ER was very faint positive however my oncologist wanted me to start ontamoxifen to cover that.

I had hit menopause, however 2 months ago I started spotting with fresh vaginal bleeding. It was happening every single day. My oestrogen is very high and they also noticed cyst on my L ovaries. I am referred to gynaecologist however I am really worried now. Anyone experienced the same?

Just a note my onco has asked me to stop tamoxifen now.

Love yo all

Nilima

Dx 3/2/2016, IDC, Right, 4cm, Grade 3, 0/4 nodes, ER-/PR-, HER2- Chemotherapy 3/22/2016 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Surgery Lumpectomy: Right Radiation Therapy Whole breast: Breast, Lymph nodes, Chest wall
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Apr 2, 2020 08:40PM peggy814 wrote:

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?

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