Oct 6, 2013 12:45PM Annette47 wrote:
I've only been on it for about 6 months, but as we have a very similar diagnosis, I thought I'd share what my oncologist said, which is essentially that it would be up to me. He presented the recurrence risks, risks of a new primary, and also the risks of SE's from Tamoxifen and left it up to me, saying that either way would be a reasonable choice. What I decided was to try it, with the knowledge that if the SE's were too onerous, I could stop taking it. So far they haven't been - if anything I feel better (less PMS, more regular cycles) on the Tamoxifen than I did before. I've had a few mild hot flashes, some brittle nails (already improving) and recently some thinning hair (nothing noticeable to anyone else - hoping that resolves soon too).
As to how I came to that decision, I chose to take it for a couple reasons - first, I was 45 at diagnosis (46 now), so I figure I have many more years of risk ahead of me - both of recurrence and new primaries. Having had a lumpectomy, I still have plenty of breast tissue to worry about, and finally, I have no reason to think that I would be at any extra risk from serious Tami SE's.
I do have a friend who 8 years ago had a bilateral mastectomy for a small area of DCIS, chose not to take Tamoxifen and recently was diagnosed with a new primary (Stage III). While I know the odds of that happening were incredibly small, knowing that the Tamoxifen can help prevent something like that was comforting. If heaven forbid, I end up being diagnosed in the future, I'd feel better knowing that I've done everything possible. But that's me - I've seen other people on these boards who said they would be ok having not chosen the Tamoxifen in that scenario. Definitely something to consider though - how you would feel.
Best of luck with whatever you decide!