I'm diagnosed a year and a half ago, and not yet in treatment. My white count just reached 30,000, i seem to be more tired than usual daily, each week I feel like i'm fighting something (sniffles, stomach, whatever), and the lumps in the side of my neck are pronounced all the time (used to be only when I got sick before I was diagnosed for many decades)
I'm seeing a hematologist at Lynn Cancer Center in Boca Raton every six months, and I think she is competent, but lately I've been wondering about something I'd like opinions on.
I know there are doctors who see more patients with CLL than others, and who might be in centers of excellence in this field. Places that do research in addition to treatment. I saw an article about Anthony Mato at Sloan Kettering, and I was quite impressed. I started thinking if I owed it to myself to try to get to see him for an evaluation, even though I have a diagnosis and am told we watch and wait. I live in Lake Worth Florida, but I can travel to NYC here and there if I want to, and my insurance is Medicare with a Supplement so I don't have any barriers there either.
Am I going overboard with this ideal, or does it make sense to some of you.
Thanks for your opinions.