Posted on behalf of lynn123
Tamoxifan i was diagnosed in dec2011 stage 1 grade 3 had lumpectomy and no nodes involvement er=4 pr =0 my oncologist has put me on Tamoxifan but i have been reading some nasty articles about the drug has anyone else refused to take the drug? thanks
Depends where you got the information from. I woudn’t recommend “Googling” anything as there is so much information out there that can be very scary reading no matter what you look up.
I was on Tamoxofen for a short time but it didn’t work for me at the time but that was 13 years ago. Since then I have been on other hormone tablets including Arimidex, Aromasin and Fermara/Letrozole. All of the side effects sound scary but they have kept me well and I cannot say I have been troubled unduly with any of the side effects. It is worth taking them form my point of view, to keep the cancer under control. Hope this helps. Val
Hi Lynn,
Sorry you are so anxious about Tamoxifen. It is a very well established, ‘tried and tested’ drug that has served countless women very well over several decades. Very few people get severe side effects, and most who do are able to manage them with or without drug intervention. A very small number of people find the side effects too awful and stop - but unless you try you won’t know if you are or are not one of them.
There is a recent thread on this topic here: Search Results | Breast Cancer Now which might be worth reading through to help you think it through a little further.
Hope all goes well, whatever you decide.
thanks ladies i have been taking the tablets and must say havent noticed any side effects except my menstrual cycle is little messed up, it was a web page a friend googled and it said Tamoxifan causes cancer. My mum was on Tamoxifan for 5yrs and dont think she had any problems but sadly she lost her fight earlier this year so cant ask her x
Sorry to hear about your Mum Lynn.
I have been on tamoxifen for nearly 2 years now, few problems to start withas I started on Wokart brand which didnt agree with me but I am fine now,just the occasional hot flush.I have more problems with my shoulder which my doctor has put down to tendonitus, I am not too sure, think it might have something to do with the statins I am on,think I might try to do withiut them for a week or so to see if it makes any difference!!
xx 
Hello
Just wanted to add that I was on Tamoxifen for 5 years, no problems at all (wish I could say the same about Letrozole!) but as you will realise on these forums that everyone is different. Tamoxifen is considered the “Gold Star” treatment though and I say just give it a go and see how you get on.
Hazel
Hi Lynn,
Sorry about your Mum.
The reason they say Tamoxifen causes cancer is because it can thicken the lining of the womb, and in a few cases that could become cancer of the womb, but you should be checked up to avoid that happening, and the worst that could happen then is better than a recurrence of breast cancer. I hate it when people say how dangerous Tamoxifen is, because it can greatly improve your chances with regard to breast cancer. I am post-menopause and another thing they say is: aromatase inhibitors have easier side-effects than Tamoxifen. Well, as far as I’m concerned, the side-effects of Arimidex were worse and I’m back on Tamoxifen. It has effects in the rest of the body that are more like oestrogen, so it shouldn’t cause osteoporosis, for instance. Anyway, Tamoxifen certainly wouldn’t be prescribed if its benefits didn’t greatly outweigh its (slight) risks.
There must be a publication about Tamoxifen on this website. It’s worth knowing what the risks are - for instance, I have had more frequent eye tests, but there are no problems. I’m still looking forward to coming off it in September 2013!
Hi Lynn
As Zeppa says, we do have a factsheet on Tamoxifen which you might find it helpful to read, here’s the link to the page where it can be either downloaded or ordered:
www2.breastcancercare.org.uk/publications/treatment-side-effects/tamoxifen-bcc20
Hope this helps.
Best wishes.
Louise, Facilitator
I started Tamoxifen in 2003 when first diagnosed with breast cancer. I took it for the prescribed 5 years and had very few side effects. I was 55 so was just starting the menopause anyway. I had manageable hot flushes and nothing else really. I so did not want to stop taking it as I felt it was holding the cancer at bay.
In 2011 I was diagnosed with secondary breast cancer with deposits in my spine, thigh shoulder etc. At this point I will try almost anything that will hold back this awful disease. Reading about side effects isn’t always helpful as no two people are the same.
Good luck whatever you decide.
Margaret
Hi I too was on tomoxifen for 5 years and only real side effect hot flushes and at start night sweats but I too can not say the same for letrozole (femara) I am now on but side effects affect everyone differently some people have none!!!
I’ve read a few times people that people had hot flushes when they first start taking tamoxifen but how long is “the beginning”? a month, two months?
first few months Gadget Gal but they have settled down apart from the occasional one. Maybe 4 - 6 months in and I was not noticing any real SEs
And if you do get fllushes, there are things you can take or do to help counteract them if they’re serious enough to need intervention.