I was diagnosed with Invasive ductal carcinoma, not in lymph nodes, ER negative very slightly PR positive, I have had chemo and starting radio today but have been told to take tamoxifen for the next 5 years, really worried about side effects as it sounds like they can turn you into a male, thining hair, facial hair, changes in voice, weight gain, blood clots, hot flushes the list goes on and with me being ER neg and only slighlty PR positive it is unclear if the tamoxifen will have any benifits, I was wondering if anyone else had made the choice if to take or not and what side effects people have had, whilst on chemo I was having zoledex injections to close ovaries and have not had a full nights sleep in months due to hot flushes even with sleeping tablets dont know how much more loss of sleep I can cope with?
I too had invasive ductal carcinoma, not in lymph nodes, ER positive and worried about the side effects. I asked my Onc about the statisics and tamoxifen increases my chances of surviving another 15 years by 1%. I decided to try it and if the SE are bad to give it up. Only taken it for a week so far and no SE except slight flushes about 3 times a day, but was post menopausal anyway. Good luck with your descision.
Hi kfl, you are the second person this week on this forum with an ER- PR+ dx! I was dx in May 2006 with ER- PR+ but also HER-2+. I was highly PR+ and have been on tamoxifen since May 2007 and have had no real problems taking it. I would rather take it than not even if it only gives me a slight benefit. I do have problems sleeping but would probably put most of that down to having young children. There isn’t much info out there I’m afraid about it. You probably won’t get much from your onc either. The only thing I can say is I am being treated at a centre of excellence and my onc is happy for me to carry on taking it. Please see other thread running - I think it is called double negative. Take care. Love xxxx
Thanks for the posts you have really helped put my mind at ease, I have stopped stressing so much about it now, have a meeting next week with ONC but I think I will try and see what SE I get xxxx