I am trying to make treatment decisions can any of you share your experience who are ER+? My question is:
Did you take the 5/10 year tablet?
Im not finding many posts about if secondary came on the tablet or stopping was decision that was regretted or not regretted.
I need to make my decision by tomorrow. NHS predict is saying its guarunteed ill have spreading even on the tablet
Thank you
Hi,
I was diagnosed with my primary in 1999. I took tamoxifen for 5 years and then Letrezole for 5 years I was ER positive.
my secondary cancer to bones came in 2014 and have been stable on Exemestane. I’m glad I decided to retake the hormone tablets for ten years.
Hope this helps your decision
Deb
x
Hi…I hope my answer will help you but with many of the questions we need answers too nobody can tell us as they don’t know. (Even though I still continue to ask…).
I had primary in 2000. Was prescribed tamoxifen for 5 years but (after discussing with my ONC) stopped after 2 as wanted to try for family. That didn’t happen but I didn’t start back on it again. I was diagnosed with local recurrence (DCIS) in 2008 and 2009 then secondaries in 2013.
I dont regret the the decision I made as I made it for the right reason.
The only advice I can offer is to go with your gut feeling and that I have taken both tamoxifen and then anastrazole for three years when first diagnosed with secondaries and tolerated them both well with just hot sweats as side effects.
I so hope I am saying the right thing here and haven’t confused you even more.
xxx
Hi
I had primary in 2009 and was told I would take tamoxifen for 5 years. 2 1/2years in a breast surgeon told me that I would be changing to exemestane. I hadn’t been told that this would happen so I queried it and asked what the side effects were. I was told joint pain could be a problem. My oncologist said it would make little difference if i stayed on tamoxifen so I did. About a year after stopping tamoxifen I was diagnosed with sbc in my bones. I hadn’t had any symptoms that concerned me, it was picked up during an investigation for something unrelated. I was put on exemestane.
I had few side effects on tamoxifen but have had more joint pain, particularly foot pain with exemestane. I have now been on exemestane for 3 years. 3 years is quite good going. It won’t work forever.
This doesn’t answer your question, just how it worked for me. I wonder what would have happened if I had stayed on tamoxifen for longer or had switched to exemestane. I’ll never know. Everyone is different though.
Hugs Bon