need onc. willing to let me stay on AI's after 5 years!

kate727

Hi, I am 12 years out. I was stage 3, with 9/15 positive nodes. My tumor was almost 5 cm with skin invasion. I am ER positive. Her 2 neu neg. not sure about projesterone. I did 5 years of tamoxifan, then had complete hysterectomy removing both ovaries, then went on Femara. I have been on Femara now for prob 5-6 years. My oncologist said no more. But I really feel the suppressing of the estrogen is what has made me do so well. I am terrified to go off Femara. Can any one recommend an oncologist who will at least entertain the idea and let it be my choice? I am well aware of the side effects. Anyone in Ohio, Indiana, Michigan?

diana50

hi kate

i live in california so can't help with an oncologist.  i was on arimidex for 6 years. my oncologist didn't totally refuse keeping me on the drug; however; she said 5=6 years is pretty much the limit.  the damage to your bones can be significant on the AI's.  additionally, the side effects (joint and inflamation) can be rough. i know that everyone is different on how they feel about being on hormone treatment as time moves on and as you continue to be NED.  i wish you the best; you are doing great....12 years is a long time to be NED.

best

diana

Kicks

Just saw my chemo Dr yesterday and again he said that current research says that I'll be on Femara forever. Been on it for a bit over 2 yrs.

kate727

Did he say why? I would like to know why he says that, I need some amunition!

Kicks

Kate - Because being IBC (Inflammatory Breast Cancer) I am at high risk.

cp418

http://community.breastcancer.org/forum/78/topic/782990?page=1