I was on Cabergoline for 8 months and my tumor grew from 3mm to 9mm. The medicine kept my prolactin level down to normal, but did not keep the tumor from growing. Second MRI this year showed more than one tumor now and on a bed of cysts. I've had cushings-like symptoms and prolactin-breast engorgement. I'm having it all removed on Dec 19th. I'm nervous about surgery, but I'm symptomatic and I'm tired of feeling this way, plus i don't want it to grow any larger.
I think its important to bear in mind that a lot of what you read on the internet are people that are having problems with surgery or meds and are searching for answers (myself included!) There are also people out there that have had good outcomes, but they aren't always posting about it. Good luck with whatever you choose. I'll update after my surgery. Fingers crossed for us both.
I had the surgery. I had Cushing's and a prolactinoma so I had both out.
I don't have experience with that surgeon. Good luck!!!
I met with my Endo yesterday at Mayo in Rochester. After another MRI and continued elevated Prolactin after 2 years of therapy, she is recommending removal. I meet with the surgeon today. Does anyone have experience with Mayo in Rochester? The reviews online of Dr. Atkinson seem very good. Thoughts?
I guess my question is this...should I tolerate the meds? What I mean by that is, if I tough it out on the higher dose, will it (or is it the 'norm') eventually become tolerable? Has anyone else had their tumor grow while on meds and then increased dose and had it shrink?
If you don't tolerate the meds, and your tumor keeps growing... it sounds like that is your only option.