Topic: After Mayo, a third opinion
After my CAT scan in July found that my tumor had started growing again, I posted questions about getting a second opinion, and all you wonderful helpful people gave me info that led to my taking a trip to the Mayo Clinic in MN for a consultation with Dr. Steve Alberts.
Unfortunately, what happened there was a big disappointment. He and Dr. Turja basically glanced at my chart and said the same thing my onc. here had said-- start Gemzar and Xeloda immediately, and stay on them for the rest of my (short) life. I was out the door by 10 a.m., after being told to bring clothes for three days. They told me PDT, ablation, and any other chemo drugs "were not proven effective" and when I asked if my case might not be unusual given that, after five years, I STILL only have one tumor, Dr. Turja said, "Yes, that happens sometimes, but then they start growing really fast." Gee, thanks!
When I got back home to KY, a doctor and a nurse (friends of mine) leaped into action and got me an appointment with oncologist here who used to be a professor at the University of Kentucky med school. He is WONDERFUL! He is the first oncologist I've ever had who doesn't act disappointed that my cancer isn't behaving the way it's "supposed" to, and actually listens to what I say.
He agreed with me that we should first find out just how fast the tumor is growing before deciding on treatment, so I had a new CAT scan, and guess what-- the tumor hasn't grown any more in ten weeks! So his plan now is to give me blood tests every 4 weeks (my liver enzymes are OK and CA19-9 is now 3... yes, THREE) and a scan every three months, and not to start chemo unless it starts growing at a rate that concerns him. Finally some empathy and common sense!!
Sorry this is so long-winded, but I just want to underscore what Jeff and others have said so many times-- get a second opinion, and a third, and keep on until you find someone who cares about you. And even if a doctor is some whiz-bang at Mayo or MD Anderson, if they don't listen to what you're saying, KEEP LOOKING.
Thank you all so much for encouraging me in this! Wishing you all the very best.