Hello Lizzell, 

I am sorry to hear that coming off Tamoxifen after 10 years has left you feeling so exhausted and emotional. 10 years is a long time to be taking a drug and it may be your body's way of adjusting to the change. I would maybe give your doctor a call and describe these symptoms in detail. I am sure your GP will have some good advice for you and suggestions to help you feel better again. I do hope these symptoms will subside very soon and that the doctor can help you get back to normal again in no time!

Best wishes, 

Lucie, Cancer Chat Moderator

Hi Lucie (and Lizzell), I stopped Tamoxifen a couple of months ago after 11 years. I have some of the symptoms described on this forum - mainly extreme fatigue and headaches. How long is it likely to be until I feel better? I was given no warning of the effects of stopping Tamoxifen by the breast cancer specialist who suggested I stop the medication. 

Hi Lucie (and Lizzell), I stopped Tamoxifen a couple of months ago after 11 years. I have some of the symptoms described on this forum - mainly extreme fatigue and headaches. How long is it likely to be until I feel better? I was given no warning of the effects of stopping Tamoxifen by the breast cancer specialist who suggested I stop the medication. 

Hi all, I had stage 2 breast cancer, her2 positive 5/8 estrogen and progesterone positive at age 32. I had a double mastectomy,  chemo, herceptin and Tamoxifen for 10 years. Reconstruction surgery took several years.

I finished Tamoxifen June 2023. The fear of coming off it made me very anxious but counselling and a short dose of mild antidepressants helped me tremendously. 

Apart from normal life illnesses like cold and flu germs like I have today, ive noticed over the last couple of weeks I've actually felt like my old self pre-Cancer. Much more energy, less brain fog, confidence returning and mostly feeling braver to plan for the future rather than fear it.

I eat very healthily, dont drink much (2-3 units at most a week, sometimes no alcohol for a few weeks). I exercise regularly a mix of yoga, weights, cardio and swimming for a good balance. Exercise helps my mind as much as it does my body.

I do find a daily prebiotic is key for a healthy gut, Cod liver oil with vitamin d for brain and bone health, magnesium with zinc and calcium helps with sleep and bones plus a supplement called Propolis for a healthy immune system. So if I'm unlucky and Cancer returns, I know I've done everything I can to stay healthy so will be more mentally strong to deal with it. 

Wishing you all the very best ️ ️ ️

I have been on tamoxifen for 10 years thinking I should wean myself off them rather than stopping it completely.  Any thoughts? While on it I have had extreme flushes and mood swings. 

Hi  sorry I missed your msg until now! We all react so differently so I don't think there's a silver bullet. I personally came off it straight away as I recall a study that showed being on Tamo >10 years increased the risk of endometrial Cancer. Hope you're doing as OK as possible