Hi. I have just found this thread after searching about coming off of tamoxifen & wondered how you were getting on now?

I have been on tamoxifen for almost 10 years & have had a few side effects but feel this is a small price to pay for the protection & peace of mind. 
 

My oncologist advised me to stop taking the tablets in Oct 22, which will be 10 years. He said to just stop & I will be fine, no side effects. I was already worried about stopping them as they are a security blanket but I am even more nervous after reading some of the comments on here about so feeling poorly after. 
 

Can I ask how you are getting on & how you have been since coming off? 
 

Thanks x

Hi, it's been nearly a year now and I'm doing really well. I didn't get the awful side effects that I'd read about on this thread, for which I'm very grateful. I've had more achy joints this past year but think this is just normal. I am approaching 60 and there's a lot of arthritis in my family. I've made a concerted effort to lose weight and managed 1.5 stone. Though I have out on a few pounds over Christmas. But I try to eat a healthy diet and walk regularly. As I get older and especially now I'm not taking any medication,  I feel more of a responsibility to look after my health as best as I can. 
 

If you do have any side effects don't be Afraid  to go back to your GP.  Don't focus too much on other peoples experience as it is different for everyone. I hope it all goes well for you and you continue to have good health.  

Thank you so much for taking the time to reply.

I am so happy you are doing so well & that you didn't get any of the withdrawal symptoms others have mentioned, it has made me feel a bit better. I think adjusting my diet will be good & I will try to remain active then hopefully I will be fine.

All the best for 2022.

Karen

Hi 

I've just been advised (by text!) to come off it after 12 years. I've arranged to discuss with my consultant next week, but I feel quite nervous about losing the protection after so long. And I didn't think there might be side effects either. 
 

x

Wow I can't believe you have been told by text, that is terrible. I didn't know you could be on it longer than 10 years. I was initially told 5 years & then they said another 5 which I was quite happy with. I hope the telephone consultation helps put your mind at rest.

I haven't seen my Oncologist since before lockdown but we still have our annual appointment by telephone. He told me to just stop taking Tamoxifen in October this year. He knows I am worried but there doesn't seem to be any help 10 years post operation for these types of concerns. Like you I feel protected whilst taking it. I try not to worry & tell myself that I am a big girl & that I will be fine but......

I found a couple of threads on here where people were saying they were experiencing problems after coming off Tamoxifen, this was not what my Oncologist said so I thought I would message one of the ladies who said they had just come off it. I am so grateful to bluebellz for her reply.

I would be interested to know what your consultant said, if you can find the time to reply. 

Keep well x

The text came from the GP, who has been in contact with the breast clinic, but I would like a little more information! I suspect I fell through the net during lockdown, which is why it has extended to 12 years, and I didn't chase because I wasn't sure I wanted to come off it. It's complex isn't it, part of me wants to, part doesn't. Hmmm. Will report back once I have spoken to consultant xx

Hi

i am slightly hijacking this thread, off topic...,just wondering if any of you ladies who have been on tamoxifen for 10 years started out as node positive, grade 3 diagnoses? I am recently diagnosed and it feels almost impossible I will be here in 10 years so guess I'm looking for some hope from long-term survivors. (HER2 neg/eR positive) 

thanks 

I was just wondering about these side-effects as I will be reaching my 10 year anniversary on Tamoxifen in about a month's time, but I wanted to reply to your post hel39. I was diagnosed with node+ ER+ HER2- BC (grade 3) in May 2011 and I'm still here. I'm sure you're feeling overwhelmed right now, but long-term survivorship is increasingly common, thanks in part to Tamoxifen.

Thank you for the reply. Yes, so overwhelmed- pre-menopause, high grade and still awaiting for node-clearance this Thursday to see how many are positive. Just so frightened I won't see my children grow up. 
 

congrats on your ten year anniversary (if that's the right word). It is nice to know people respond that well to the hormone therapy. 
 

thank you again.