Have been on Tamoxifen for 4 months with no side effects, until now. I have suddenly felt horribly flat and hopeless for the last 10 days. Like all my happiness and hope have been switched off. I'm suspicious that Tamoxifen is to blame because it's suppressing my oestrogen. The only other times I have felt like this was when I tried the Pill and when I had PND. So I know I am sensitive to hormones.
My oncologist won't advise me either way, but has admitted that "the benefits from taking Tamoxifen, for you, are very small" because of my type and stage of BC. I used the NHS Predict tool and it tells me that I only have an increased risk of reoccurance of 0.6% if I stop taking it. That's miniscule.
Did anyone else feel this flat and low on Tamoxifen? If you stopped, did you feel better afterwards? Please help me decide x
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Help my decide if I should stop Tamoxifen.
peaceanddove · 15/07/2020 17:57
Wanted to also mention that I have also gained 8lbs since starting it, and have just had my first dose of cystitis in years which is apparently very common if on Tamoxifen. I just don't think it's worth it.
I know specialists like to bandy about how Tamoxifen reduces your risk of a reoccurance by 30% or 40%. But what does that mean in absolute terms? I think it's actually only the difference between, say, 5% risk without Tamoxifen Vs. 3.5% with Tamoxifen (just rough figures).
So actually, the absolute benefit is tiny overall 
That's a really helpful post, thank you so much. Like you, I'm still struggling to process the fact I even had BC because it all happened so fast. No symptoms, just picked up on a routine mammogram. From diagnosis to surgery was less than 3 weeks! And, because my BC was less than 2mm and my boobs quite big, I was actually given a therapeutic reduction and lift. Under any other circumstances I would have been thrilled. It was all totally surreal, like it happened to someone else. My first memory after coming round from the anaesthetic was a nurse smiling and saying 'That's it. All gone.' I never felt I even had it in the first place. So confusing.
Thank you so much for sharing your experience with me. I was prone to these very bleak episodes before BC thanks to my having PMDD, but only happened once or twice a year. Very worried that my now lack of oestrogen might mean this low is going to be permanent 
If I still have it this time next week, then I can be 99% sure it's the Tamoxifen, as my PMDD episodes never lasted more than 2 weeks.
OP, having been there I really think talk this through with your oncologist and nurse. I had no side effects from tamoxifen so can’t comment, but I did nearly stop chemo as it was rotting my veins. I didn’t stop, and I’m now 11 years clear and I am so grateful to my oncologist for bullying me in to continuing. It doesn’t matter what we all say - maybe think of this as having that extra look before you cross the road? Wishing you all the best whatever you decide - it will be right for you 
@Duchessofealing
Well at least my horrible low mood has disappeared, so that's one thing I can't blame on Tamoxifen, just my usual hormonal crash that happens every now and again.
I have emailed my oncologist and asked him to elaborate on what he means by Tamoxifen being of "only of very small benefit".
When I asked him about potentially using local oestrogen cream for my vajazzle he was against it and said he would prefer I just stopped Tamoxifen! Now, I know that there's a vanishingly tiny risk of using localised estrogen, and most consultants happily prescribe it to breast cancer survivors (except for mine).
So, presumably my benefits from taking Tamoxifen must be virtually insignificant?
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