High estrogen - Zoladex/letrozole not working?

SSInUK

I asked my GP to check my hormone levels just for reassurance, as my onc just switched me from tamoxifen to letrozole on the assumption zoladex is keeping me menopausal - I've been having the injections for 11 months. The results showed normal FSH (not surpressed) - and very high levels of estrogen. I am panicking as I had a very limited response to chemo, but was told my extensive hormone positive disease 'should respond well to hormone therapy' . I've been switched to an AI for extra estrogen suppression after a local recurrence. But, it seems I now have estrogen levels that would be high for a young fertile woman on no medication at all. Has anyone experienced this? Is it zoladex not working? Has anyone experienced that? Neither my GP nor friend who is onc understand it.

dtad

This infuriates me! Why should you have to ask to have your levels checked??? Why is your GP doing it but not the doc who is prescribing it?? Why isn't this done routinely to see if our anti hormone treatments are working??? Why was your doc assuming the zoladex was keeping you menopausal?? This shouldn't be a guessing game! Maybe you could get your gynecologist and/or an endocrinologist involved. This is a huge gap in our treatment plan and it needs to be addressed. There are so many women out there putting up with SE that affect their QOL and there is no testing to see if its working. Just not right.....

RainDew

SS-

I had this too. Zoladex essentially failed me (I am in my 30s). My onc orders monthly blood tests for E2, and my levels were premenopausal for nearly half of the months I was on Zoladex, so I couldn't take an AI (had to stay on tamoxifen).

I am in the US, and my onc had seen it quite a few times before. Given my high risk of recurrence, and highly hormone positive cancer, I had a bilateral ooph after a year.

I agree w dtad above, it seems negligent that your onc wouldn't be checking estrogen levels regularly in a premenopausal woman on zoladex given it does not work 100% of the time.

I am so sorry this is happening to you. I was so stressed the whole time I was constantly panicked about the stupid estrogen test. I am relieved to have had the ovaries out frankly.

SSInUK

thanks both of you. Very useful to know your experience Raindew. I've not seen my onc yet, he's generally brilliant but I agree dtad - this is a major gap. Stunning really that it's not routine to check this. After all the thousands spent on our treatment, it's a simple blood test. I felt like I was being a squeaky wheel to ask for it but v glad I did now. It appears I also have some thyroid/anaemia issues which can also be related to the whole picture. Raindew did everything settle for you to where it should be post ooph? I am thinking of running to a Gynae surgeon to whip my ovaries out right away.

Ladies on zoladex beware - ask for your hormones to be monitored.

RainDew

SS - you are definitely NOT being a squeaky wheel. No way!!! It makes me so mad that our docs can fail us and WE feel bad for advocating on our own behalf!

Zoladex is a good drug - it works for the vast majority of women. But for some, apparently particularly very pre-meno women (like me in my 30s) it doesn't. So the blood test should be routine.

My docs had me wait a year to make sure I was ready, but the ooph has been easy. Maybe in 20 years I will regret it, but I will be thrilled to be having that problem if you know what I mean.

Big hug, hang in there.

R

new_direction

thank you for this info. I don't get blood tests but will ask for them.

I have hot flashes and periods have stopped but I wonder if estrogen levels could still be high?

fizzdon52

Hi there, I had this same problem and freaked out too thinking it wasn't working. But it actually was. I can't explain it very well but even though it looks like it's not working, the doctor will be able to explain the hormones that are supposed to be surpressed are! Gosh I wish I could explain better. Have you actually talked to your Doctor?

SSInUK

Hi there - not sure I understand Fizzdon - what did you experience? I'm pretty sure estrogen is supposed to be suppressed by this treatment - think that's the whole point? My estrogen level is very high. I have been on zoladex for 10 months. I have contacted my onc but not heard back yet but meantime both my GP and aclose friend who happens also to be onc are somewhat mystified...

fizzdon52

I wish I could explain it too. What happened was a had a blood test to see if I was in menopause. The blood best said no, I freaked out and rang the Nurse who was confused. She put me on to the Doctor who said the important reading (the once I can't remember what it is called) was very low and that was the important one. Sorry I don't understand this medical jargon but they put my mind at rest.

Moondust

Great topic! SSInUK I'm glad you were on tamoxifen and just got switched, because the tamoxifen probably gave you benefit. Even though I'm menopausal I will ask for my hormone levels to be tested at my next appointment! I am on anastrozole.

SSInUK

Fizzdon - I'm guessing here, but o wonder if we're talking about different things. As I understand it, when you're naturally menopausal your FSH climbs high as your body tries to compensate for not having eggs by stimulating your ovaries like crazy. So docs look for v high FSH as a sign of natural menopause. On Zoladex, your FSH is supposed to be very low, the drug suppresses it to stop you ovulating. A low reading is therefore ok. My problem is my reading was flow but still in the normal range. But much more important, ot should reduce your estrogen to menopausal levels and mine is sky high. The only other lady I can find with this kind of result turned out to be pregnant while on zoladex!!! So it can happen. I'm definitely not pregnant - but peri menopause can send your estrogen levels up and I wonder if that's what's going on - or if it's literally a big lab error.. Btw - I'm having hot flashes too but apparently estrogen fluctuation per se can do that

SSInUK

Moondust - thanks, and yea the fact I' was on tamoxifen till 2 months ago is my only comfort - but I don't like the 2 months, or now, when I'm waiting fir a doc answer

dtad

fizzdon55....the issue is that hormone levels are NOT being checked. Its not about how they are interpreted. Good luck to all.....

RainDew

SS - I thought it was a lab error as well - I was so shocked. The first time E2 levels were around 40, then climbed from there.

My MO had me run through all the supplements (I don't take any) and products I use (his view is that some pricey creams etc can do this, but not in my case). He didn't think there was any dietary cause, and rejects the idea that foods (like soy) make any difference based on studies.

He said he'd seen it a couple of times before at the major teaching hospital where I am treated, and therefore never puts very young women on 3 month lupron and always does monthly bloods. My options ultimately were tamoxifen, zoladex and and tamoxifen or ooph and AI. I chose the latter.

Good luck!

Mommato3

I had my estrogen levels checked several times before I finally had an ooph. The Zoladex was working for me. I read an article (can't find it now) that said giving an AI to a premenopausal woman will cause their estrogen levels to rise. This is a good reason to have your estrogen levels checked periodically while getting Zoladex or Lupron.

SSInUK

My estrogen levels are just under 500....the lab form says normal is a third of that, menopausal should be a fraction. Bonkers. Thanks all for discussing. It looks like I won't get more answers till onc appt next week so this is a stressful wait. Helps to communicate. Will let you know what docs say.

I am also the lady who just had more cancer discovered in IM nodes during Diep surgery - These are neither routinely investigated/biopsied or included in radiotherapy fields in the UK, but some studies state they may harbour disease in up to half of high risk patients (most stage 3-ers). They were found in me only cos Diep surgery involves dissecting between ribs to reach a blood supply. I sometimes look at survival stats and wonder how many of those who progress to stage 4 may have had undiagnosed IM nodes, or hormone therapy that unknowingly failed etc. And what else don't we know about till it happens to us? Paranoia? Maybe. We can but try and stay calm, trust docs are smart and want to cure us - and ask questions....

SSInUK

mommato3 that's v interesting will go hunt for that info

Tresjoli2

so I am not stage III so my apologies for butting in. I am on lupron, and tamoxifen. I was complaining to my onc about the fact that it felt like I was having rally bad period cramps and ovarian pain after my lupron injection. She is now measuring my levels every three weeks during this lupron round, because she suspects the lupron isn't working...and my ovaries "wake up" as she put it, which she does not want. If her suspicions are correct, she intends to double my lupron injection to the men's dose. She said it can happen, and she's seen it before. Just thought I would share my experience.

SSInUK

Don't apologise this is not a stage 3 issue exclusively - although we tend to get the heftier treatments like zoladex more routinely; thanks for sharing your experience. It does say in the leaflet that double dose might be needed in some people

luckylegs64

SSinUK,

I'm doing some "natural/alternativel" things to suppress estrogen in addition to Aromasin that you could consider. Not all would agree, but these things empower me somewhat, to do what I can do. Watching any foods that are considered estrogen based or estrogen mimickers. I also see a Functional Medicine doctor (she is an MD with training in Biochemistry) who has me on supplements (ok'ed by my MO) that assist in me eliminating/dumping my "bad estrogen." She explained there were 3 biochemical processes in my body that allow me to dump my bad estrogen, aromasin only works on ONE of these THREE processes. Best to you!

Optimist52

luckylegs, would you mind telling us a little more about the three processes for eliminating oestrogen, this sounds very interesting.

LM070917

hey mommato, that's true that ALs can cause estrogen to rise up pre-menopausal women when taken alone, but not when combined with Zoladex, it actually lowers it.

As premenopausal myself, I had zoladex prior to chemo. I know it started working because it stopped my period and shut down my ovaries. Since then I have bloods tests to check my levels.

SSInUK

Update: I saw my oncologist. He thinks I am a rare but not unknown case in which zoladex does it fully surpress FSH/LH levels. NB - my levels were low, and it stopped my periods - BUT there was not complete suppression it seems. If you then take an AI, it lowers the level of estrogen made from body fat, and the body reacts to the drop by prompting my ovaries to make more. That is the mechanism which zoladex should stop - but if it doesn't you get this feedback loop with precisely the opposite effect of what's intended, ie over production of estrogen. Ladies, this is unusual but not unknown - and I had no bleeding, I had hot flashes - nothing to say it wasn't working except the blood test. Ask questions. I'm having an oopherectomy next week