Hi Jfs and welcome to our forum.

I am sorry to hear about the problems that you're having with Tamoxifen. Have you mentioned this to your carers at the breast clinic? Some people find that a different brand of Tamoxifen can help and, it might be worth discussing this with your consultant, oncologist, or breast care nurse.

Are you only scheduled to be on Tamoxifen for 5 years? I understand that the new protocols are now for for 10 years.

Your fear about how you might feel if it came back is perfectly normal, but it might be wise to check that you will be stopping it next year.

I hope that between you and your care team you can sort something out.

Do please keep in touch and let us know how you get on. We are always here for you.

Kind regards,

Jolamine xx

Hi Jbains,

How long were you on Tamoxifen for? I'm glad to hear that you have no regrets at having stopped taking Tamoxifen and, it's great to hear that your quality of life has improved.

It will be interesting to see how you get on at your review in July.

What treatment are you having for your knee? I had to have both of mine replaced 4 years ago. You are fortunate that you didn't put on weight. I was careful with my diet, but put on 6 stones. Since I stopped taking Letrozole in 2017, I have lost 5 stones by sticking to a strict diet and atteding exercise classes.

I fully agree that we have to weigh up quality of life, as opposed to simple survival, but we need to research the odds first and foremost. I'm glad to see that you have done this and, hope that your results in July are good and, show that you are doing the right thing for you.

Kind regards,

Jolamine xx.

Hi jolamine,i havent and dont see anyone in regards to breast cancer after id been given end of treatment in 2015..and put on tamoxifen

i have a yearly mammogram for 10yrs and thats it.jeanette

Hi I was on tamoxifen for 2 years and 2 months. The dr moved my review to sept. I've had a few issues with swelling and pain again in arm, armpit and boob and fatigue. So am waiting for physio appt as cannot lift my arm past my chest.  So gone backwards slightly but it's fixable. Dr's are now recognising how badly fatigue stops one getting back to "normal" so physio will help that as well.

My knees are under GP care so playing waiting game for results from xray..

Hope you get it all under control.

Hi Jeanette,

Why don't you contact your breast care nurse and tell her about the problems that you're having. It may just be a case of changing you to a different brand of Tamoxifen.

Please let us know how you get on.

Kind Regards,

Jolamine xx

Jolamine prior to being told I had breast cancer I was training to compete in a triathlon. After my reconstruction I got my fitness levels back and was ready to compete , then like a sledge hammer the pain hit my feet . I thought I had hurt myself running , but then it started in my hands . So of course I did my research and came to the conclusion that tamoxifen May be the cause of this . I then talked to my oncologist whom confirmed that this is a side effect . He also told me that I am strong and will get by . Tonight my bone pain in my hands and feet is in orbit . I can barely hold my phone and as for my feet I am dreading having to stand up . For the first time I am actually crying as the pain is so acute . I know I have to continue this medication for another three years . Please tell me there is something that I can do to help without too much expense as I am no longer working . ( sadly lost my position as not functioning at 100%.) kind regards 

Hi,firstly im not saying this for everyone to do as peoples circumstances e.g.surgery etc not same as mine. Having 9months of 5year course of tamoxifen,as ive already posted to that point was hell for me..i contacted breast care nurse and got call from cancer doc who suggested due to me having good prognosis to stop taking Tamoxifen and see how i go next 6/8 weeks..i can tell you within week 1 the pain has eased considerably..i seem to have this new lease of energy..not back to normal,been 2 weeks nearly but cant believe difference.hopefully this will continue..j

9 months left of 5years tamoxifen 

I’ve been on tamoxifen for 8 months now and things got worse over past couple of weeks, hips so painful that it was agony to walk, knees stiff and sweats day and night. I was worried and went to GP as I was concerned that this could be secondary but this was dismissed. I changed to taking tamoxifen in the morning instead of last thing at night and that night I got a good nights sleep and wasn’t soaked in sweat when I woke up, then I didn’t  take the pill yesterday and today to see if it would make any difference and it has. Gone are pain in hips and down to a couple of hot flushes during the day. I’m going back on it tomorrow but now that I have peace of mind that my symptoms are down to tamoxifen.