Please go to MD Anderson in Houston. Try to see Dr Renata Ferraro, her specialty and research is in ACC. I went two weeks ago and got lab work, CT scan plus saw her in the same day, my first visit there. Also she called in two different research PhDs to start studying me. I also had a MRI. There is a hotel connected to the hospital and right at her office, lab, imaging center, just walk across skywalk. Hotel is the Rotary House, cost $146 a night. My ACC has moved to my lungs, stage 4. Bless you, thoughts and prayers are sent to you