tamoxifen

Hello @FionaM13

Here is a link  your exact question which someone else asked recently.  She received several responses ....

https://onlinenetwork.bcna.org.au/discussion/25928/not-take-any-hormone-therapy-medication#latest

Hope that helps.

Thank you 🙏 

@FionaM13

What is it that has put doubt into the situation for you?

I guess I’m 44 yo and I’ve been reading the side effects, they seem to sound very severe I’m already struggling with body changes due to surgery it’s all very overwhelming. But yes mostly the side effects with no real guarantee it may return. 

Not everyone suffers side effects.  You will find lots of posts about side effects and not necessarily those with no side effects....

Tamoxifen is prescribed and or Aromatose Inhibitors to help mop up any stray cells. 

A link that hopefully will give you a better understanding 

https://www.bcna.org.au/resource-hub/articles/hormone-blocking-therapy-and-metastatic-breast-cancer/

Thank you I’ll have a read :) 

@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 

Thank you 🙏 this was very helpful lots to think about. And lots of questions for the doctors. 

Hi FionaM13,

I just want to let you know that I will probably be put onTamoxifen also after my double mastectomy next week, so I've been researching and then I asked my cousin, as she was on it, she told me she had NO sides!!

I think if you haven't been through menopause perhaps its worse because it probably gives you menapause symptoms I guess, but she said she did LOTS of exercise and ate healthy, she felt ok.

Just thought I'd let you know, hope this helps. Good luck.

Sending hugs, I know it must be stressful.

xx

And try and take it the same time every day!