Hi Lisa, I think you've raised a really interesting point and one which I believe has a lot of merit in terms of needing further study / investigation because although Tamoxifen has been around for a very long time and has proved effective in treating (and possibly preventing) breast cancer, the side effects for some people seem to be considerable and is the reason why the recent study on hormone therapy mentioned on the BCNA website (http://202.129.142.90/understanding-breast-cancer/general-breast-cancer-research/) shows that many women discontinue using it after a period of time because of the side effects. Given the proven effectiveness of this treatment this is not an optimal situation and I would hope that down the track there will be further studies looking at the effectiveness of different dosages.
I have been on Tamoxifen for almost 3 years (with a brief switch over to Arimidex) and I have to say that the first 12-18 months were very difficult, with severe hot flushes, leg cramps and joint pain. I remember complaining to my breast surgeon about the hot flushes, sitting there drenched in sweat, and he took one look at me and said "well at least we know it's working", which I know he meant kindly but didn't make me feel any better!! Fast forward to now, these effects, while still there have dropped off considerably and I only have a few hot flushes a day (made worse if I drink tea or coffee, but sorry I'm not giving these up) and the leg cramps and joint pain are much better due to using magnesium supplements (thanks Robyn and yes, my oncologist is also OK with that) and Vitamin D tablets as well as getting a bit more exercise. I also switched to having my Tamoxifen at night and things seem better (don't know why!!).
I really sympathise with you Lisa about feeling like an old woman. I was 49yrs was diagnosed and for a long time I found it very difficult to move as my joints were so stiff and sore and wondered if I could continue. I'm glad I have persisted as I know the Tamoxifen is incredibly important in lowering my chances of recurrence so I would recommend talking to your oncologist about using magnesium and Vitamin D to see if they help you, and like Lisa says, you can always get a second opinion if you don't think your concerns are being taken seriously.
Best of luck, I hope things settle for you soon. Jane xx
