Hi there. I've made the decision just last week to come off tamoxifen after surgery, rad treatment and 2 yrs of taking tamoxifen. My risk is 32% - to me that is low enough to get some quality of life back. I have seen a tiny improvement but it's still early days. Back to see consultant in 5 weeks. He's meant to be country's leading expert and when I told him of my symptoms (very similar to all) he said tamoxifen isn't cause. Yeah right. 

There's a new tool out now designed by an American doctor which when all medical info is inputted it tells you the risk over 5 years then 10 years. They've also discovered breast cancer is as unique as a person's DNA- that's simply put. You have to read whole article

scienceblog.cancerresearchuk.org/.../

I am happy with my decision but you have to decide what's best for you and your body/situation.

Hope it goes ok and wish you well.

Gosh, using predict, my Risk/benefit is 1% with tamoxifen and I would still take it. 32% is really high, why would you risk it?

To me 32% isn't high. If it was above 40% then I would not do it. I have vision issues, dizziness, fatigue and my periods have come back very painful pls and now digestive issues. My quality of life is not what i want - I can't work full time either as I'm getting severe fatigue so I don't want to be on tamoxifen for 10 years and then be put on an aromatose inhibitor. Many studies have been done about Er+PR+ HER2 negative cancer and tamoxifen so I am satisfied doing the trial 6 weeks of not taking it. It's a personal choice and like I said you have  to do what is right for you. That's why I made the choice as I know my body and I've done my research and spoken with my consultant (who is country's expert). To me, a benefit of 32% isn't worth taking it with all the aide effects.

Please let me know how you get on, any withdrawal effects, how long it takes for you to feel more like you.  I’d really appreciate it.  I’ve decided to start taking my tablet at night to minimise night sweats and so get a good nights sleep to help with fatigue which is my main issue.  Next mammogram due in July.  If that’s all clear and I’m still not feeling good I coming off it.  Your right quality of life is so important.

Please let me know how you get on, any withdrawal effects, how long it takes for you to feel more like you.  I’d really appreciate it.  I’ve decided to start taking my tablet at night to minimise night sweats and so get a good nights sleep to help with fatigue which is my main issue.  Next mammogram due in July.  If that’s all clear and I’m still not feeling good I coming off it.  Your right quality of life is so important.

Hey Usedtothefiht. I have been on tamoxifen for 2 years and am back to the consultant in 5 weeks to discuss further. I'll gladly let you know how I get on but fatigue and dizziness a tiny bit better. Still have digestive issues. I took mine at night too but didn't help with fatigue. I also have added joy of pain and swelling at surgery site and ribs. My list is long but trial and error for all I'm doing. I've always said that ones cancer is unique to them as their DNA and we all react differently to every stage of this journey both physically and mentally.

Thank you, good luck with the rest of your journey.