Letrozol and lupron worked for me before I got my ovaries removed but I just got my estrodial levels checked today and they are back up to pre-menopausal numbers (93pg). Has anybody ever heard of this happening and if so, what was the result. I will start tamoxifen immediately but will need to start another anxiety reducing drug since my SSRI isn’t advised. Which is concerning of course along with the higher estrogen levels despite lack of ovaries.
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Hi @Kay0987 I’m sorry no one has had a similar experience they can share with you yet. Hopefully there’s a forum member who can offer insight.
In the meantime, please know that our nurses are here for you with clinical questions or for a chat. You can get in touch with them here on the forum on the Ask our Nurses your questions board or on our helpline 0808 800 6000 which is open Monday to Friday 9am-4pm and 9am-1pm Saturday.
Sending our warmest,
Lucy
Im not quite the same as you but i had hysterectomy and ovary removal in 2007 but my IDC has come back PR+ & ER+ which confuses me sonce its so long since my surgical menopause!
Dear@ Kay0987, I have had this happen to me but in a different situation. I was prescribed Letrozole post chemo, mastectomy, and herceptin for an Er+ cancer her2 +/-. I am 67 years old so post menopausal. Prior to taking Letrozole I had a large uterine fibroid. 11 months after taking Letrozole I still had the original fibroid, had grown another one, had developed endometriosis and an ovarian cyst. All my growths are stimulated by oestrogen and Letrozole is often given to shrink fibroids so what was happening? The most plausible theory is that the Letrozole was stimulating the pituitary gland to produce follicle stimulating hormone FSH to either produce oestrogen or turn testosterone into oestrogen ( not entirely sure how it works!) This is how Letrozole is used in fertility treatment. Sometimes the body reacts strongly to being deprived of something it needs by finding another way of making it. I stopped the Letrozole and am now under gynaecology for quarterly surveillence mris.
Hi Kay,
Hope you’re well! Just come across your post. I have never heard of this happen but it’s good that it has been spotted.
Can I ask why your estrodial levels were tested? Is this standard procedure in US?
In the UK, we don’t test for this but I am wondering whether I should get mine checked out, as I too, am on letrazole and have had ovaries removed.
Sending love
Carrott
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Oh thank you, Tulip. Your story is indeed similar which is of comfort. Anyway right now the going theory is that I have lean PCOS and like what happened to you, other parts of my body have developed the means to supply me with estrogen due to my ovary removal. I go see an endocrinologist next month but in the meantime it’s tamoxifen for me until we figure out how to tell my adrenal glands to quit it. Or find out that it’s something else causing it. I always knew my endocrine system was wonky but this is some weird ass crap.
Carrot, a couple of weeks ago I noticed my hair had started getting thicker again and it took me by surprise. I assumed that maybe I had finally healed from chemo or had adjusted somehow to everything but it crossed my mind as a little weird so I casually mentioned it to my oncologist. She had asked me how I was feeling and I told her so good my hair was growing back and if she’d ever heard of that. She mentioned no it had always been the opposite and we both looked at each other and kind of joked about estrogen. Neither one of us thought it a possibility because I had no ovaries. How could it be estrogen but she ran the blood test for it anyway although it’s not something that’s usually done here either. But that’s how we caught it and I say “we” because I’m the one who told her that I wanted the blood test once she brought it up as a possibility. I’ve done a lot of research this week since I discovered my estrogen and failure on letrozole does happen. It’s probably why some people’s cancer comes back. So if you notice something weird, don’t assume it’s normal even if it’s a cool thing. I mean my hair looks fantastic right now. But I’d prefer no estrogen.
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I am so glad you’ve told me this - thank you.
I am going to mention it to my consultant as I have my yearly check coming up. I don’t have many symptoms of menopause full stop.
I have always thought I have been lucky but wouldn’t be surprised if my oestrogen isn’t fully suppressed.
Hope you’re ok. Is the solution tamoxifen or something else too?
Sending love
The solution right now is tamoxifen and a changed anti-depressant. I think I’ll like the new anti-depressant. Tamoxifen not so much. It allows your estrogen to be active in certain parts of your body and quite honestly I felt more stable without estrogen. I really loved menopause. I see an endocrinologist next month and hopefully s/he will confirm it’s PCOS and we’ll go from there. But at least the risk of estrogen feeding any stray cancer cells has been alleviated so there’s that. I will say that what is happening to me is very uncommon. I mean think about it. I have no ovaries, the main source of estrogen. Letrozole should have been a no brainer and quite honestly was when I had my ovaries. Once they removed them my adrenal glands seem to be overcompensating for whatever reason but that is really rare. So don’t worry about it for yourself. Even when my estrogen was virtually 0 I had no troublesome symptoms of menopause so chances are great that it’s that way for you, too. But…it can’t hurt to get checked 