Tamoxifen side effects

Going through breast cancer treatment Hormone therapy
1

 

I wanted to start a little conversation about Tamoxifen! More to the point the battle of the guilt! Like most I’m in the extremely fortunate position to be hear to be discussing the rather naughty little tablet, but my goodness the rollercoaster that you ride when you are taking it.  My experience was that I spent the best part of a year and a half being given different prescriptions such as Wokhardt, Teva, Tillomed and all kind of others which come with a plethora of side effects ranging from palpitations, restless leg, loss of libido, weight gain, joint pains, feeling like an OAP in my late 30’s but worst by far; feeling so low, general despair and being very high or very low.  After a time I found what was my saviour for about 6 months- Mylan! Barely any side effects and totally bare-able! My doctor popped the brand on my prescription and everything was tickety boo! But then to my horror the pharmacies started telling me they couldn’t source it! I phoned every pharmacy I could find in the UK and appealed to everyone I knew that lived in further flung places but to no avail! I had no choice but to get back on the rollercoaster! Fast forward another 6 months and I was a mess! After my mammogram last year my surgeon told me that it was a case of weighing up the risk and quality of life.  He told me my risk based on the type of cancer I had had was minimal and that I should come off if I felt as bad as I had told him.  This was music to my ears at the time! I decided to take the summer off! That was July 2021 and here I am April 2022 and I haven’t gone back on.  I’m finally going to see an oncologist today to speak to him about the increasing fear I have of not doing everything in can be doing to keep the beast at bay and be here for my little ones.  It also doesn’t help that I’ve picked up a lovely  bit of health anxiety that’s makes me constantly worry about every ache and pain.  I find myself totally amazed that this issue exists- how is it possible that the ingredients in these meds can vary so massively, can cause such extreme side effects and that it’s just a complete lucky dip on what you are given? How is there not more support on finding the right brand or making sure the supply is more obtainable and general aftercare relating to this very issue?  I was told by professionals that the palpitations that I was having were probably anxiety from the trauma I had been through (I knew my body and my reactions to stress better to believe this) and on the extreme opposite side that feeling better on mylan was most likely just a placebo effect because I was desperately trying to find something better! All of which doesn’t help when you are in an emotional and desperate pursuit of being able to stay on meds and not feel like a sack of crap! I’ve read a million forums and lots of people seem to find common brands that are the best of a bad bunch, but they’re all ones that don’t work for me and more worryingly the most common solution I have come across is that women just stop taking it!! Surely there has to be a better solution? Does anyone else relate? Has anyone else had any professional guidance on this that actually helped?

2

I relate ! (Disclaimer - this is not a post designed to make women worry about tamoxifen, or to encourage people to not try it as many cope with it fine and have minimal side effects! I would never want anything I say here to be something that affects anybody taking a medication prescribed in their cancer treatment.)

I was exceedingly unwell on Tamoxifen, I had every physical possible side effected listed and many more besides - I was like an old woman, I still have the list here in the back of my diary and it staggers me to read it now. I even had urinary incontinence, muscles that were spasming and raised BP - but as I say, the list was a long one ! The worst part was my mental state, I was desperately and concerningly depressed after a number of weeks. I would say, I had no quality of life to speak of. I had previously had a post-natal hormonal psychosis and therefore it wasn’t out of the ball-park that I was going to be suspectible to problems with tamoxifen and infact any hormone changes. For a number of weeks a few letters went back and forth to the hospital from my GP and everyone pushed for me to continue with it, citing the high grade of cancer etc. After seeing my oncologist a few weeks later, she removed me from tamoxifen and said that if I was to re-take it it would be under the gaze of mental health services as it affected me so badly and I was simply desperate, it was as if I was having a full body oestrogen depletion. (I’m not under the care of mental health services by the way, and hadn’t been since my post-natal experience)

So, I would say, that there are some women - luckily the minority - who have a very very intolerably, infact unbearably, hard time on hormone related medication.  Anything you take is your choice, and only you can weigh up and it seems you are being practical and know yourself and what is real and not real. I came up against a few medics who simply could not grasp how I was feeling and were about treating the body only and not the mind, until the final oncologist who understood my level of response to the drug. The guidance I had was that I had to weigh up the balance - and decide what is a better life for you. In one way for me it was easy, I was living no life on tamoxifen, but of course the fear of not taking it was also overwhelming and that is something I have had to live with since stopping it.

I would have an open an honest conversation with your oncologist, and state your concerns and thoughts just as you have here. My experience was quite a few years ago now, and there may be different guidance, possibilites in treatments, things to alleviate symptoms - lots of things that might possibly be different. I know that some women decide to be treated with anti-depressants and still take tamoxifen, some try evening primrose and a few other herbal things which have been lost from my memory Talk through the stats, the possibilities, get their perspective on the risk - of course we don’t know which women tamoxifen works for and which it doesn’t so there are always grey areas in any conversation about it. Ask them - is there anything else I could try ?

Sorry, no solutions from me here, but total empathy !

3

I have been on Tamoxifen since October 2021. I lost the weight I gained when I quit smoking. I wanted to lose it before going on this drug. The oncologist told me it would be virtually impossible to lose weight once on it. A month later, I got my first UTI. Mind you I was 46 years old. I noticed some mood swings, so I started to take it in the evenings. I started to do kickboxing in Novemeber 2022 for the stress I was under, and it helped tremendously. In April 2022, I was told my PAP came back abnormal and had my cervix scraped May 2022. I had a full Hysterectomy in July 2022 because those results came back inconclusive. After that surgery, I felt on top of the world (although very painful). This was because I had no more mood swings. I said how much I love life, and it will be lived to the fullest for now on. Unfortunately, two weeks after my Hysterectomy my fiancé went into the hospital with heart pain and had a stroke 4 days later. It has been nothing but stress, and the mood swings are terrible. Almost as if I am not even the same person anymore. I feel angry, sad, I feel like everyone is against me, and my body hurts constantly. It is March 2023, and my Oncologist appointment isn’t until June. I am not sure what to do because everything I read about being on antidepressants are negative towards the tamoxifen. I don’t want the breast cancer to come back as I have two of my own children and fiance’s son, and fiance who depend on me. I also don’t want them to think I am crazy, and that I keep blaming it on the tamoxifen. Please help anyone!