I had my breast cancer removed in 1988, followed by radiotherapy and Tamoxifen 20mg daily. 23 years on I am stil here and well, I regard myself as one of the lucky ones. Howevre, my optician is now concerned about my eyes and thinks I should stop the tamoxifen. All the websites I have looked at only list eye problems as “rare”, has anyone else taken it for this long? If so, how are you?
Wow Anna - 23 years on Tamoxifen! I have never heard of anyone taking it for that long. I can only tell you that since oopherectomy and only 3 years on Arimidex my eyesight is deteriorating. I have had 2 different prescriptions in 12 months. Oestrogen plays a large role in eyesight I think.
Really interested to hear from other women who have taken Tamoxifen for a long time.
Can i ask why u have been on it so long? I thought after 5 years the risks outweighed the benefits?
hi all. i too thought tamoxifen was for 5 years. i have been on tamoxifen for 19 months and my eye sight has changed and my eyes seem to twitch a lot more too. xxx gaynor
Hi Anna
Is it really a positive decision by some medical person that you’ve been taking Tamoxifen for 23 years? I’m not being facetious - are you sure that it’s not that someone has forgotten to review your case and tell you to stop taking the pills? I’m no expert but in your situation I would be asking some serious questions, starting with your GP since he/she must be the one issuing the repeat prescriptions and then work your way up the medical food chain from there.
Sarah x
23 years!! Are you sure they’ve not just forgotten about you? I thought the ‘norm’ was five years. I will be on it for five years and that’s enough for me.
I was due an eye test half-way through Chemo and the optician told me to wait until all treatment had finished as the Chemo would affect my eyesight. I have been on Tamoxifen since the middle of February and my eyesight has definately gotten worse. I am booked for an eyetest net week and just know that I will need a new prescription as even when wearing my glasses now I have trouble focusing.
Karen
hi we should be entitled to free eye test and glasses, being on cancer treatment. it sure does mess with your eye sight xxx gaynor
Thanks for all these comments, they didn’t forget me my surgeon retired and his parting words were “I would keep taking it if they’ll let you”. A few years ago I bumped into a breast cancer specialist at a conference so I asked his opinion and he said that as long as I had no side effcets (have had hysterectomy)it was OK to carry on. Now my eyes are affected I think I will have to stop but I somehow feel SAFER taking it. Interesting that some of you are having eye problems already. Cheers.
Sarahx
Hi Anna,
Was a bit surprised also to hear that you’ve been on Tam for 23yrs as I also thought it should only be for about 5yrs!
Couldn’t believe what you were saying about your eyesight. I’m 40something and have been on Tam for just over a year. I’ve been saying to people how bad my eyesights got over the past year and most people said, “It’s just your age” and I have to say I thought they were right!
A few weeks ago I was chatting with a lady from Breast Cancer Care and she said it could be the Tamoxifen as there are reports about it affecting your site. I also read up on it and they seem to say it’s rare for it to affect your site but since then I’ve heard of a lot of women in the same situation. To be honest I can’t even read the food labels in the supermarkets so I’ll def be putting an appt on to get my eyes tested soon!
Maybe you could get another opinion regarding still taking the tamoxifen just to be on the safe side.
Regards
Maureen x