Anyone else chosen to stop Tamoxifen?

[peaceanddove]

Hi. I was diagnosed with early, very small BC in February 2020. I had surgery, followed by radiotherapy then just placed on Tamoxifen 20mg for 5 years. Since taking Tamoxifen I have gained 10lbs, struggled with excessive bloating and digestive problems, suffered with vaginal dryness and UTIs and painful joints.

6 weeks ago I stopped taking it on advice from my surgeon, prior to my tummy tuck operation. I quickly noticed that my joint pain disappeared and I've lost the 10lbs (without trying at all) and that my vaginal atrophy issues have gone. My digestion has improved and basically I just feel much brighter and better in myself.

Consequently, I am very reluctant to restart Tamoxifen. I contacted my oncologist and he (grudgingly) admitted that my overall protection benefit from taking Tamoxifen is only 0.7% as opposed to not taking it! I'm so shocked! Originally, I was told that taking Tamoxifen increased my protection from reoccurance by 50%!

I'm really interested to hear from anyone who has made the decision to stop taking Tamoxifen because the unpleasant side effects vastly outweighed the benefits.

I cant talk personally but my mum stopped taking it due to the unpleasant side effects. She was offered a different, much more expensive drug which she has taken. If I can get hold of the name I will get back to you but she is a bit brain foggy from another condition so might not be able to tell me. It is about 7 years since she had the radiotherapy.

I've been taking it for 7 years and not had any side effects that I'm aware of although I do put on weight easily and struggle to get it off but that may just be my age.

I did go on Letazole for about a year & it was awful. I had such painful joints I could barely walk so they putt me back to Tamoxifen.

@MildredPuppy

I cant talk personally but my mum stopped taking it due to the unpleasant side effects. She was offered a different, much more expensive drug which she has taken. If I can get hold of the name I will get back to you but she is a bit brain foggy from another condition so might not be able to tell me. It is about 7 years since she had the radiotherapy.

That would be really useful to know, thank you x

@ArsenicNLace

I've been taking it for 7 years and not had any side effects that I'm aware of although I do put on weight easily and struggle to get it off but that may just be my age.

I did go on Letazole for about a year & it was awful. I had such painful joints I could barely walk so they putt me back to Tamoxifen.

Hi. Thanks for replying. I can't say that I felt dreadful on Tamoxifen, but at one point my GP was trying me on Amitriptyline for joint pain, water tablets for the bloating, various lotions for the vaginal dryness and a low dose, daily AB for the UTIs. I rattled when I walked - all just to counteract taking Tamoxifen.

Has your oncologist not offered you an aromatase inhibitor such as Arimidex or Femara?

Just resurrecting this thread to say that my oncologist said there was only a tiny benefit for me taking tamoxifen and even that wasn't very clear, but that I would almost definitely get negative side effects, so I never went on it.

I’ve just made the decision to come off it, after 18 months (quite haphazardly taking it). I re-did NHS Predict and the benefit over 10 years was 1% - not worth it at all!! They seem to put everyone with ER + bc on it without really exploring the benefits against risks. So many women come off it or take it irregularly because of SE.

I totally agree with @Puddingnpie . Oncologists have this “throw everything at it” attitude with little attention paid to SE.

I tried tamoxifen - one brand had less SE than others for me, but gave up on it. I am 9 years clear despite having highly aggressive BC.

YMMV though, so perhaps a discussion with your oncologist?

NHS predict doesn't work for DCIS and my oncologist couldn't find any statistics for risk of recurrence. It seems strange.

I just wanted to know my recurrence risk with and without tamoxifen but he couldn't find anything on this. He just said there are no proven benefits for DCIS.

My concern is that my cancer was 8/8 ER+ and I've just found out I have high levels of testosterone, which the body converts to estradiol (oestrogen). But again I can't find out any information about this.

Hello. Only just come back to this so had missed the last few posts. I re-did the Predict test and found that even after 10 years the chance of my BC returning are the same, whether I've taken Tamoxifen or not - actually, there's something like a 0.3% difference between the two. So, statistically there's just no significance for me to take Tamoxifen!

I've only been back on it for 4 weeks (after my tummy tuck operation) and already I've gained 3lbs (genuinely not eating any differently), and I'm really struggling with vaginal dryness + soreness. Plus, the excessive tiredness is back.

It's just not worth it. I'm so done with it. I think it's crazy that I was even put on it in the first place!

I never took it as my Onco told me my body wouldnt tolerate it due to my rare auto immune disease( Scleroderma) she told me its rubbish and the benefits are so small its really not worth it. Many more women need to be told this.

I agree. My oncologist had originally told me that Tamoxifen would provide nearly 50% more protection than not taking it. So a huge difference, right? Except that 50% is just the relative difference. The absolute difference is actually the difference between 0.5% and 1% more protection.

It's scandalous that women aren't informed of the true percentage of protection that Tamoxifen actually provides.

My mil stoped tamofen as it didn’t agree with her (although she had a lot of tablets disagree with her over the years).

I’ve taken it for nine years and not had any major problems, except for hot flushes at times.

I didn’t know the Predict website existed, although I did know there was something similar, as the consultant used it to predict the benefits or otherwise of chemo (I didn’t have it). Maybe it wasn’t in the Public domain nine years ago.