I am 47 years old. I was diagnosed with early-stage, high-grade oestrogen+ DCIS a few months ago in my left breast. Since then I have had a lumpectomy, followed by a mastectomy (margins weren’t clear on the first surgery), and the total extent of DCIS in final pathology was found to be 114mm.
I have been prescribed 20mg tamoxifen (1 tablet per day) for the next 5 years. I started taking it a few days ago.
I have read about the side effects. I am reaching out to learn from others who are on tamoxifen on what has worked well for them in terms of diet, exercise etc to prevent, minimise or manage side effects. Grateful for any advice.
Hi,
Sorry to hear what you have been through.
I was prescribed tamoxifen after lumpectomy/chemo/radiotherapy 10 years ago aged 48.
It sent me into medical menopause, which was quite a shock as I hadn’t started with any menopause symptoms. So be prepared, I wasn’t! My main symptoms were hot flushes which were a pain but I did get used to them, as most menopausal women do. Dealt with them by wearing layers so I could easily and quickly take some off, having a fan with me in warmer weather and wearing thin light nightwear.
I also avoided caffeine and this seemed to help. It’s a pain that you can’t take any medication to help as that is hormone based! Although my oncologist was ok with me being prescribed oestrogen cream to deal with vaginal dryness, again a common menopause symptom.
I did get achy joints but nothing too bad, just slight tender elbows really.
Be wary of complimentary medicines to help with symptoms as these again can interfere with the effectiveness of your tamoxifen.
But don’t worry, on the whole it was all manageable, just came as a shock as hit me without any real warning. Also the positive was the tamoxifen keeping the cancer at bay!!!
I was offered some cognitive behaviour therapy to help but didn’t take up the offer. In retrospect wish I had, as heard good things about it helping.
Good luck and hope you get on ok with it. I really believe the positives of tamoxifen outweigh the negatives x
I am also 47 and been on Tamoxifen for nearly seven months. First thing I would say is that you may not get any side effects. It can seem from the many posts and things online that it is a certainty it will be awful when lots of people, myself included, take it with no issues at all. I may be wrong, but I believe the two main reasons I don’t have any problems are not drinking alcohol and doing regular exercise. There’s lots out there about exercise mitigating against side effects of treatments and the added bonus of evidence showing it also reduces risk of recurrence. I consider exercise as much a part of my ongoing treatment plan as taking the tablet. Dr Liz O’Riordan talks about it a lot, may be worth a look if you haven’t seen her stuff already.
Been in Tamoxifen nearly 3 months. A few minor side effects during the first month, but nothing that would stop me taking the tablets. This past 4 weeks have been completely free of any side effects…to the point I wonder if it’s working!
I’m being moved on to Zoladex and an AI shortly, but I gather they have the same menopause effects.
What to avoid…grapefruit apparently. Something in them that makes the tablets less effective. I think that was on the instruction leaflet or one of these “official” sites. Also bear in mind the aim is to reduce the effects of Estrogen, there is also some evidence that alcohol can change the “chemical” process. The advice varies between sites, but the general recommendation is no more than 5 to 7 units a week.
Good luck and I hope you one of the few with no side effects x
@sal1’s reply made me remember a couple of other things… Avoid turmeric as that can reduce the efficacy of the medication. Green tea, on the other hand, is meant to increase it. x
I had heard about avoiding turmeric and grapefruit but didn’t know you should avoid alcohol. Although obviously it is generally better for you to avoid.
I’m not a heavy drinker but do enjoy a few glasses of wine over a week, probably around 9/10 units in total but not every week, and I have recently had a recurrence despite taking tamoxifen. Makes you think it could be related
Thank you for taking the time to share your experience and advice. I have an active lifestyle and don’t drink so fingers crossed that it all goes well.