I’ve just come off Tamoxifen because of the side effects including memory lapses and ‘woolly thinking’. My onc did listen to me and agreed it was the best thing for me. However, my prognosis is good - risk of recurrence as low as it can be - so it made sense not to seriously impact the quality of my life for the next four and half years. This wouldn’t be the case for everyone and you need to carefully understand your own risk factors before making a decision.
As I’ve been reading and contributing to posts on the SEs of Tamoxifen, I am amazed that there hasn’t been a more comprehensive study of the side effects since so many are listed here on these forums that appear to be described as uncommon on the leaflet that comes with the pills. Surely it wouldn’t take much to gather data from every woman who is taking Tamoxifen, at regular appointments during follow up?
The effects of Tamoxifen for me have been the worst part of the whole treatment and the hardest to explain to my employers as I present them with yet another sick note. I am very lucky that I have an exceptional GP who has believed me and supported me and stopped me from thinking I was going mad. There needs to be a much wider knowledge and understanding so more women don’t have to live with this misery just because its the easy option for the medics.
My oncologist has been very fully aware of the issues with me in relation to hot flushes and memory loss, which are both due to the lack of oestrogen or tamoxifen’s interaction with the hippocampus area of the brain. In terms of side effects, neither of the above are medically significant issues, they are more to do with quality of life.
Throughout all of my treatment it has been made very clear to me and well explained that there is a balance of risk with quality of life, permanent damage to my body versus death from breast cancer etc. I’ve always been part of my decision making process and so should we all, after all, these are our bodies we are talking about. I made the decision to have chemo in order that if I had problems with tamoxifen then I would feel reasonably ok coming off hormome treatment if I needed to. My oncologist has said that as I have a good prognosis I would be ok to come off tamoxifen after 2 years as opposed to 5, but to try to stick it till then. He has recommended everything that he can for me to take and now it is up to me to decide what to do. I expect that if my prognosis was bad then all the risk factors would be entirely different and I would have a different decision to make.
So far, I’m coping with the memory loss, although it is very frustrating. And it looks like the hot flushes might be on the way out - hooorrraaay!
i’m reading this thread with great interest as although i am on letrozole not tamoxifen - i have the same sort of symptoms.
i also have horrific joint pain and get really bad pins and needles in my arms. my g.p. has put me on a high strength anti inflammatory for a month to see if that helps.
i have been on letrozole for almost 5 months now and was really hoping the symptoms would lessen.
i have a good prognosis but when i told onc and g.p. that i was considering coming off it - they threw their hands up in horror!
i really feel that my quality of life is compromised - prior to b.c. i was fit and active - now i feel like an old cronk!
i feel that it is stopping me moving on from b.c. and getting my life back.
hymil - After reading your post, I Googled “low oestrogen and cognitive dysfunction”, as I had always wanted to know exactly why low oestrogen affects brain function. I found this interesting article. It is American and I take it that ERT is our HRT.
The part that made me laugh was where it says that my husband will have more oestrogen circulating his body than me, due to aromatisation of testosterone to oestrogen!
The part about postural stability will explain why I can no longer stand on one leg to put my tights on:)
If you really do have a good prognosis, then you need to go back to your GP and onc and insist that they justify to you why you have to keep taking the meds.
I had the same issues with joint pain and my GP had prescribed Tamoxifen (I can’t take anti-inflammatories because of a bleeding disorder). The Tamoxifen knocked me out so I could sleep, but it left me feeling muzzy during the day and I wasn’t happy with it as a long term solution. I am really against taking drugs to counter the side effects of other drugs as who knows where it can end. I was fit and healthy before bc and I wanted to be back to the point where I can tell if there is something wrong with me and not be wondering if it is due to medication that I’m taking. I also needed to get back to work and it was out of the question while I was taking Tamoxifen. I stopped Tamoxifen 9 days ago and went back to work today for the first time and it was great! I feel like myself again - although still a bit tired.
My onc showed me an online program that he has access to that helps to calculate the risk factors based on your pathology report. It then comes up with a recommendation as to the benefits of adjuvant therapy versus the risks and the side effects. It is called Adjuvant Online and you should ask your doctor to use it if he doesn’t already.
Good luck and don’t be afraid to stick up for what is right for you.
OMG what a scary article. It has clarified my worst fears about the sudden drop in oestrogen levels in my body as a result of a chemo induced menopause and now followed by taking tamoxifen. OK, so I might not get a recurrence or die of breast cancer but I’m likely to suffer dementia, falls and alzheimers at a younger age. And there is no hope of it getting better, I’ll just deteriorate with my memory getting steadily worse, not being able to function as a normal human being. Horrible thought.
Surely there comes a point where this is just not worth it? I almost think I’d rather take my chances with the cancer and come off the tamoxifen completely.
Sorry, Helen. I didn’t put the link on here to scare you. I just wanted to know why it was affecting my brain and this seemed a good explanation. I thought others may want to know, also. It didn’t say that low oestrogen necessarily leads to all those things, more that oestrogen may offer protection if one is pre-disposed.
I still feel it is well worth taking the Letrozole that I am on and wouldn’t want this article to dissuade anyone from taking Tamoxifen or an aromatase inhibitor. Everyone is different, as we all well know.
If anyone thinks that I should remove the link, then let me know but no-one need read it if they don’t want to. What do BCC feel?
Thanks for that one Ann, I must have missed it. Funny enough the rest of my body managed quite well on reduced oestrogen, just my brain really needed it.
Well done to you Elsk and I’m glad you are feeling so much better
Hi there it makes me wonder if I will be ok to return to work as I have a very responsible job with very vulnerable people its a wonder that doctors ect should work while on these drugs but 5 years is a long time to be off sick !!!
You know what? Even after 10 days of not taking Tamoxifen, I am still suffering with the cognitive effects. In my last post I meant to say that my GP had prescribed Tramadol for my joint pain, not Tamoxifen - I was already on Tamoxifen obviously.
Here’s hoping my brain cells recover before too long.
Ann, I don’t think you should remove the link to those articles. I found them very interesting. It was scary to read, but I think we owe it to ourselves to be fully informed of the possible consequences of medication that we’re taking. Obviosuly we want to do all we can to protect ourselves from recurrence, but not blindly following advice from people who may turn out to be ill-informed themselves. I had never come across any mention of cognitive side effects except on this forum and it horrifies me to think that many women are being subjected to this needlessly or for little relative benefit. It is almost worse than the old days when radical surgery was the answer when now they can do less invasive procedures and preserve quality of life. I really think they need to look at the rationale behind blanket prescriptions of these drugs,
I have found that the link doesn’t always work so, if not, Google “low oestrogen and cognitive dysfunction” and it is the first one that comes up - well, it is at present, anyway. The article is called:- “Effects of Estrogen: Estrogen and the Brain”. As I said,it is American, hence the spelling.
Personally, I cannot ever see myself stopping Letrozole because of symptoms of low oestrogen. I am so grateful that I have a drug that may keep bc at bay.
Don’t worry Ann, I was being (sort of) facetious when I said it was scary. It is scary, but I think we should learn about this stuff, scary or not, all the better to be informed about what is happening to ourselves. I don’t think you should remove the link, I for one am glad that the medical profession are taking our complaints as serious and not just the mutterings of menopausal women lol!
The effects of low oestrogen should be explained as a possible side effect of chemo. My chemo (which was my choice to have, not a medical recommendation) zapped my ovaries and dumped me into the menopause, hence lowering my oestrogen which is now reduced even further by the action of the tamoxifen. So even if I stopped tamoxifen I’m likely to suffer cognitive problems. I wonder if I’d known that whether I would have made the same decision about chemo.
Linda, I wouldn’t worry too much about work, there are plenty of older post-menopausal women with reduced oestrogen who function perfectly well, I think we probably become accustomed to living without it and find ways to cope (lists everywhere being one of them!). I for one find it a struggle to focus on work at the moment, but I really think that is because I was made redundant last August and haven’t worked properly since and can always find an excuse not to work when I am at home. I’m just lazy!
