I posted before and didn’t get a lot of responses probably because this has never happened to anyone. My oncologist was certainly shocked 
I wanted to update though in case this does happen to someone in the future. Anyway about 20 years ago I was told by my fertility clinic that they believed I had PCOS. I was thin with no outwardly troublesome symptoms so that was the gist of it although I have always been very good about my yearly physicals just in case something cropped up with it. And something did about six weeks ago. I started my endocrine therapy after my breast cancer surgery with lupron and letrozole and my estrodial levels were tested twice and perfect both times (under 30 is what they wanted to see and my results were under 15). Fast forward to a year and I got my ovaries out and ceased lupron as a result only now needing letrozole we thought. Fast forward to a little over a year later and I notice my hair getting thicker. Which was cool I thought because who of us wouldn’t want that. About two weeks later I mentioned it to my oncologist at my standard twice yearly visit as an example of how healthy I felt. I asked her if she’d ever heard of that before. She said no, actually it was the exact opposite. We both started at each for a moment and then I mentioned could it be estrogen, but then how could it be, I had no ovaries. She said she didn’t think there was a way but we could always check my estrodial numbers just to be sure. I said yes might as well which she did and the damn thing came back as 93. With letrozole. Which freaked us all out. My oncologist spoke to my oncologist/gynecologist and suggested a CT scan to me. Which I immediately panicked over and said is there any other way to look at this because I had severe scanxiety. She said an endocrinologist could work and then as she mused over that for a second stated that that was probably the best course of action anyway since they know about hormones. I jumped on it, did some research, went and blood work came back normal which has ruled out anything nefarious thank goodness. So what is causing my rising estrogen levels? PCOS with my adrenal glands being the main driver of it. Once my ovaries came out and I stopped lupron, my androgens kicked back in and started being converted quite well into estrogen. Essentially thanks to PCOS I make my own HRT. No idea how who we’re going to manage this once I go off endocrine therapy but right now I’m on tamoxifen and will ask to be on it at least for five full years since I have no idea how long letrozole was not working well once my ovaries were out. So in saying all this, if you have PCOS and get your ovaries out make sure you ask for regular checks of your estrodial levels. They just assumed it was still working for me and if I hadn’t noticed my hair and then not mentioned it, we never would have thought to check and I would have remained completely unprotected.
I recently found out my bc was er+ and questioned how could that be because i jad a hysterectomy and ovaries removed 17 years ago. At the time i should have gone through surgical menopause but have never had any symptoms. I had Graves disease/hyperthyroidism the year before my first bc diagnosis and had radioactive iodine treatment to surpress/kill off my thyroid. I had a very bad reaction and theyve never really stablised my thyroid. Now i know all these endocrine issues are related. So not quite the same as you but im really wondering whats going to happen when i start whatever hormone therapy the onc decides.
Ive never had my estrogen levels tested as never seemed relevant since i dont have ovaries. I thought i was just lucky escaping menopause symptoms but now the bc has come back and is er+, reading your post has made me wonder whats producing this estrogen besides fat cells, which is what the surgeon said would be responsible.
Thanks for posting your experiences
Well fat cells are responsible for it due to it making androgens. But with PCOS the adrenal glands can make a pretty good amount of androgens, too, and also the body can be incredibly sensitive to aromatization which is the process which the androgens are converted to estrogen. Anyway getting your estrodial numbers checked is a pretty easy thing to do if you wanted to make sure you had a normal amount for your age.
Thanks i never thought of getting them checked at my age being a pensioner! The thought of the hormone therapy scares me half to death!
I was post menopausal age 66 when prescibed Letrozole for Er pos cancer. I took for 11 months. In that time my existing firoid did not shrink as expected. I actually grew another fibroid, developed endometriosis and an ovarian cyst. All fuelled by oestrogen! The conclusion was that the Letrozole was stimulating my pituitary gland to produce FSH. I have never had my estradiol level measured. Perhaps I should!
Thank you for posting this information.
I believe in being completely open about any changes in your body and speaking up.
CT scan are over and done with in ten minutes and the scanner is open both ends. A CT scan can show things that blood test cannot.
Please think about accepting a scan and maybe ask for sedation to calm your fears.
Good luck with your treatment 
Thanks for posting about this @Kay0987
I have suspected for a long time that I have PCOS but just got put on the pill rather than being tested.
Fast forward to 2021 and was diagnosed with ER+ IDC and had a reoccurrence in 2024.
Maybe this is a conversation I need to have with the oncologist. Thanks for bringing it to my attention though, knowledge is power.
I would.
This is very interesting, I had read another post (somewhere) along the same lines as you, but admittedly thought that person may have misunderstood or misheard their results …its not something that I would have thought possible with ovaries removed and AI. I was premenopausal at diagnosis with ER+, and as a fellow PCOS sufferer, my Onco suggested Zoladex to shut down the ovaries and Exemestane.
Now having seen more than one post about this, it does make my mind wonder if the one important thing my cancer wants most (estrogen) can be blocked successfully.
It’s taken nearly 9 months, but I am experiencing the typical menopause symptoms now. Hot flushes …plenty. Stiffer ankles….oh yeah. Which has got to be a good sign, but I will ask about a test at my annual review.
Thank you for mentioning it.
I was fine when my ovaries were shut down. My guess is that like some PCOS women I have got LH receptors on my adrenal glands so the lupron (zoladex for you) actually shut down both my ovaries and adrenal glands. At least enough to get the low estrogen I needed. It was only when my ovaries were out and I ceased lupron that my estrogen rebounded. Anyway it can’t hurt to get checked so I would advise it.
A CT scan is a decent amount of radiation and by itself a carcinogen. I will never be one to jump on it unless I truly feel I need it. Luckily blood work in my case was a fine substitution.
Thank you for posting this.
My mum has PCOS and I’ve read it’s genetic so definitely something for me to watch out for. Really helpful to know of your experience xx
I do have another update here but at last estrogen check my levels were back down to under 15. So my adrenal glands have now regulated it seems which is a huge relief. But if you have an endocrine disorder be mindful to check your estrogen regularly. The body can do weird things.