tamoxifen
Hi Ladies, has anyone decided to not take the hormone drugs? The one I’m being prescribed will be tamoxifen, any advice would be much appreciated :):
Forum Discussion
@FionaM13
Hello,
I’m happy to share my experiences with Tamoxifen however, bearing in mind, everyone’s reasons and experiences are individual to their own situation. I was prescribed tamoxifen prophylactically back in 2017 when I was diagnosed with LCIS, which is not cancer but has a higher likelihood of turning cancerous. I refused to go on it initially as like you, I didn’t like the sounds of the side-effects. I was 46 years old at that stage. Six months later, I moved states and hooked up with another breast surgeon who convinced me to try Tamoxifen as I could always go off it if I didn’t tolerate it. I remained on Tamoxifen for approximately 12 months and the side-effects got the better of me the main side-effects for me were the hot flushes and night sweats and a feeling of being asexual. I had absolutely no libido, and I did notice vulva atrophy. My periods also stopped during this time which was probably the main blessing. I stopped the Tamoxifen and saw my breast surgeon a couple of months later and reported this to her and was also able to report that everything had sprung back to normal after being off the Tamoxifen. She recommended I commence a quarter of the dose of Tamoxifen, which I took as 10 mg every second day rather than the usual dose of 20 mg daily as she said there was research stating this dose can be just as affective for prophylaxis management with less side effects.. She advised if I couldn’t tolerate that dose, to just stop it (screening bring my main management at that time). I tried it but after another 6-9 months The side-effects caught up with me again and I stopped it. After stopping at a second time, my side of side-effects subsided again, but approximately six months after stopping it, I started perimenopausal symptoms, such as hot flushes and night sweats, although not as bad, as when I was on Tamoxifen. I haven’t been on any further medication since then. This year I was diagnosed with DCIS in my opposite breast which is extensive in nature and I am now looking to have a mastectomy (probably bilateral) with reconstruction. I did check with my breast surgeon should I be back on tamoxifen however, tamoxifen is not required for DCIS (in my case) as it is not invasive. I hope this gives you a little bit of insight however, as I mentioned my Tamoxifen was for prophylaxis and not treatment.
All the best x
Hello,
I’m happy to share my experiences with Tamoxifen however, bearing in mind, everyone’s reasons and experiences are individual to their own situation. I was prescribed tamoxifen prophylactically back in 2017 when I was diagnosed with LCIS, which is not cancer but has a higher likelihood of turning cancerous. I refused to go on it initially as like you, I didn’t like the sounds of the side-effects. I was 46 years old at that stage. Six months later, I moved states and hooked up with another breast surgeon who convinced me to try Tamoxifen as I could always go off it if I didn’t tolerate it. I remained on Tamoxifen for approximately 12 months and the side-effects got the better of me the main side-effects for me were the hot flushes and night sweats and a feeling of being asexual. I had absolutely no libido, and I did notice vulva atrophy. My periods also stopped during this time which was probably the main blessing. I stopped the Tamoxifen and saw my breast surgeon a couple of months later and reported this to her and was also able to report that everything had sprung back to normal after being off the Tamoxifen. She recommended I commence a quarter of the dose of Tamoxifen, which I took as 10 mg every second day rather than the usual dose of 20 mg daily as she said there was research stating this dose can be just as affective for prophylaxis management with less side effects.. She advised if I couldn’t tolerate that dose, to just stop it (screening bring my main management at that time). I tried it but after another 6-9 months The side-effects caught up with me again and I stopped it. After stopping at a second time, my side of side-effects subsided again, but approximately six months after stopping it, I started perimenopausal symptoms, such as hot flushes and night sweats, although not as bad, as when I was on Tamoxifen. I haven’t been on any further medication since then. This year I was diagnosed with DCIS in my opposite breast which is extensive in nature and I am now looking to have a mastectomy (probably bilateral) with reconstruction. I did check with my breast surgeon should I be back on tamoxifen however, tamoxifen is not required for DCIS (in my case) as it is not invasive. I hope this gives you a little bit of insight however, as I mentioned my Tamoxifen was for prophylaxis and not treatment.
All the best x