I was diagnosed with DCIS last Oct at age 35, and had a mastectomy and reconstruction at the beginning of the year. Thankfully, my biopsies and lymph nodes are clear so no further invasive treatment needed, but I have been advised to take Tamoxifen for the next 5-10 years.
I am 36, and am petrified of the side effects of Tamoxifen and putting me into a state of menopause. I am also confused as there are no stats that I can rely upon to make a decision on whether to take it or not as they cant predict stats for DCIS.
Are there any women who were in my situation and are on Tamoxifen and found it to not be as bad as they first thought, or is it just a grin it and bear it job? I’m so torn and cant make a decision from thin air which it feels like i have to do. If I do go on them then id have to be referred to the fertility clinic etc, as i currently dont have any children. There’s so much to think about and im very overwhelmed.
I’m 40 and have been on Tamoxifen since October. I had a bit of brain fog for first few weeks and hot flushes at night but other than that it’s been absolutely fine.
My reoccurrence percentages with and without the treatment swung it for me.
Was also advised to try and stick with one brand as apparently different people have differing side effects dependent on which brand they tolerate. I’m on Wockhardt.
Hi
I had a single mastectomy back in Aug and have been on Tamoxifen since Sept. The only side effects so far I’ve had is brain fog and tiredness. I do excercise daily (try and do 10k steps) which helps a lot. My only concern at present is the vast brands I’ve been prescribed, I think I’ve had at least 4-5 different brands so far!
Hi @shesthebeat. I started Tamoxifen about a month ago and aside from some tiredness I’ve not had any other major side effects. I’m 44. My Oncolgist said that due to being ‘young’ I would likely tolerate it ok as I’m fit and healthy and had no other health issues (which made me laugh as you know….ive still ended up with cancer…). I’ve found forcing myself to be active each day if feeling tired has helped. The poor dog has been walked and walked! I have a two year old daughter so not taking Tamoxifen wasn’t an option for me-even if it’s 1% difference in keeping this away and seeing her grow up I’m taking it. I took advice from my Oncologist and Consultant and what the results were from NHS Predict. I think it very much comes down to personal choice and mindset. I was of a mind if I’m told to take it then I will and if there are side effects I’ll deal with that when it happens.
I’m 47 and been taking Tamoxifen for seven months. In the first two weeks I had a few days where I found it hard to concentrate and a couple of warmer nights but nothing major. I think that must have just been getting used to a new medication. If honest, I felt significantly worse from antibiotics for a week after my surgery than I ever have from Tamoxifen! Since then I have no side effects at all which I believe is largely down to not drinking alcohol and exercising daily. I’ve also had five different brands and experienced no difference at all between any of them. x
Thank you to ALL of you for your help and advice! Im going to bite the bullet and go ahead with it. I’m lactose intolerant and apparently there is one brand my pharmacy does with a lactose free one, so hopefully I can get some ongojng consistency with brands.
Keeping all of my fingers and toes crossed that my body adapts to the tamoxifen. X
I was also on tamoxifen for 5 years. I am now taking letrozole. Have been on it for 4 years now. The side effects are not the most pleasant but I am getting through it just fine. You said you were on tamoxifen. It’s not bad at all. You will be just fine. Wishing you the best of health.
My oncologist said some people experience different/worse side effects on different brands. She advised sticking to one brand so if any nasty side effects can switch and cross that one off the list if that makes sense?
It might be worth you having a look at Oestrogen Matters by Avrum Bluming. I find it very informative about how Oestrogen works etc and there’s a while chapter on BC survivors with facts and figures. I named to get a copy from my local library
