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
I was diagnosed with breast cancer Nov 23 & have been on Tamoxifen for almost a year. Night sweats weren’t nice the first few weeks but bearable; they settled after about 4 weeks. No other side effects for me.
Just picked up my first prescription of Letrazole (I had elective surgery Dec to remove ovaries & fallopian tubes to reduce the risk of other female cancers so am now surgically made post menopausal) If I have bad side effects, I’ve been told I can switch back to Tamoxifen.
All of us are different & have different experiences of all medications. I’d say give it a go - you can change your mind if you experience bad side effects & just stop taking it.
I hope all goes well x
I would love to hear an update on how you’re doing! I’m 39 and had stage 1/grade 1 IDC, with pretty low risk of recurrence (RS score 11), but still advised to take tamoxifen. I had sort of come to terms with that but was just told today that I also have to stop taking my antidepressant, Wellbutrin, because it interferes with tamoxifen, so now I’m doubly concerned about side effects + withdrawal symptoms. How are you tolerating it?
Oncologist gave me the other option of doing estrogen suppression but it seems like the side effects of that are even more severe?
I can hear how worrying this is for you with being told tou have to come off your antidepressants. Im sorry that youve been put in this position.
Im over 3 weeks on Tamoxifen now, Im taking the oral liquid, as I cant have lactose. It also means I hopefully will get consistency with branding. So far ive experienced a few hot flashes, but the main thing thats affecting me is fatigue, particularly in the mornings. But I am also coming out of a cold/flu episode so I dont know if it’s compounded by that. I’ve had my first period, which shortened by a day, im hoping it doesnt go altogether as I rely on thay emotional and physical release every month.
No other symptoms to note just yet, but I can check back in in another few weeks. For the last 5 months I have been seeing a Kinesiologist (Holistic practitioner) and I am taking lots of supplements to support my body so that might be helping too.
Thank you so much for the response! I really appreciate it. I know everyone is different but I feel like hearing first hand experiences is still helpful. I’ve been taking Tamoxifien about 4 weeks now too, and thought I was tolerating it quite well (similar to you - a few hot flashes and moderate fatigue), but since I was taking Wellbutrin at the same time, apparently that means it wasn’t really doing anything. I’ve started to wean myself off of Wellbutrin, so I’m bracing myself to see what happens once the Tam is working in full force. And I guess I should try to find another antidepressant, but I’ve tried others before without success, so I’m not optimistic. I think the more productive task might be to find a therapist covered by my insurance!
You’re so welcome! I have found these forums to be so helpful in my journey, and it’s nice to feel so isolated with it all.
I read that apparently side effects peak at around 6 weeks and ahould ebb off, so I’m hoping for that in my case.
I can imagine it may feel daunting to wean yourself off the wellbutrin. Be gentle with yourself, youve been through so much. Ive definitely found therapy to be so so helpful for me over the years. I hope youre able to find something that helpsxx
I wanted to ask how its going for you on Tamoxifen?
Im now 6/7 weeks on it, and have fatigue, fogginess and whilst my period of shorter the water retention and experience of hormones is more intense during that time.
