Fortunately or unfortunately, we're not alone...or are we? When I started this process, I really wanted a treatment "coach," but saying that to a specialist elicits a response like when you talk to your dog and it turns its head. I am being treated by a team of generic specialists who office in the same building and share responsibility for my care: urologist, radiation oncologist, and medical oncologist. They're competent and the cancer is being controlled, but what I really wanted is someone to help me coordinate ADT, radiation, nutrition, exercise, and emotional effects of treatments and side effects. That's a unicorn, I guess. So I, like you, do research and learn from people like @jeffmarc and others here and in other online and in-person support groups (including http://www.pcri.org, imerman angels, ancan, zero cancer, PAN, PCF...), then take information back to my cancer specialists and to my PCP, cardiologist, and gastroenterologist to make adjustments as necessary. These support groups are my real lifeline.
@jime51
“ I really wanted is someone to help me coordinate ADT, radiation, nutrition, exercise, and emotional effects of treatments and side effects”
That is a real wide range of issues. Doctors just aren’t trained to handle all those different things. That’s why they have a wide range of people that handle emotional problems. Why they have specialist that do nutrition and exercise.
A GU Oncologist can refer you to a radiation oncologist or a urologist, But they don’t specialize in those areas. They can refer you to other people as well that are experts in the other Fields you’re wanting help in.
I guess it’s a tough If you want someone to do everything, What you do want is somebody that’s an expert in prostate cancer and can handle all of the aspects of your treatment for that. There is always so much going on, so many changes, so many new things, somebody has to keep up with that.