Urologist, Oncologist, Hematologist - who is in charge of my case?

@jeffmarc All my MO did was refer me to my PCP. It would seem helpful and profitable to have someone on staff with the oncologists whose job is care coordination and referrals. The bottom line is that it’s my health, not theirs, and I have to fight for it with or without a specialist’s help. P.S. I’m praying for your pain relief and surgery recovery.

@jime51 My husband's medical oncologist is at Simon Cancer Center in Indianapolis, which is a recognized cancer care institution and also an academic research and teaching entity. There are staff there who do help with care coordination, appointments, referrals, etc. Can you seek out a place with that kind of associated staff?

@lag Thank you! I'm nearly at the point of follow-up monitoring after eighteen months of treatment, but if I were to start over, I would do more research toward a "center of excellence" with comprehensive resources. UT Southwestern in Dallas is an hour or so distant but has just expanded a new facility much closer. If and when there's a recurrence, I'll be contacting them. I'm about four hours from MD Anderson in Houston.

@jeffmarc I'm sure I didn't explain myself well. What I wished I would have had at the outset was a care coordinator, not someone who knows everything but an information hub staff person to point me to a nutritionist, an exercise specialist, someone to help me comprehend and address side effects of treatment, and so forth. I suppose most clinics feel they can't afford to add that person to their staffs, but it would seem very helpful.

You are in charge!
My experience may be analogous to your situation.
I was being treated by a well regarded gastroenterologist for radiation proctitis. My RO deferred to him. After a long course of treatment with sucralfate, I thought that hyperbaric oxygen treatment should be my next step. My gastro doctor did not agree. My urologist was very supportive of getting hyperbaric oxygen therapy. While I wanted the HBOT treatment my personal calendar was not quite conducive to six weeks of treatment (perhaps not my best decision to prioritize deer hunting season and other events on my calendar but I decided that I could wait several months). I took the approach of repeatedly lobbying for a referral from my gastro.
Eventually he referred me to the HBOT treatment staff in the same hospital. I received the treatment and my symptoms of radiation proctitis receded significantly.

BTW, I quit Orgovyx after one year against my urologist's recommendation. I was ready to look for another urologist if he had refused to see me after I quit the ADT. (I had severe joint pain at that time.) That was 5 years ago, and my PSA continues to hover around 0.1 and my urologist says I am doing much better than he expected.

If my decisions for my care had resulted in a poor outcome, I was ready to accept responsibility for those decisions. I'm glad that I "rolled the dice".

@jime51
Makes sense.

In my case, between the urologist, PCP and oncologist, I have been referred to just about every doctor or health professional I’ve needed.

I do have a Medicare advantage plan so maybe that’s why it’s covered by a Variety people but fully covered. I just have to mention I need something. I’d a referral is done.

@jeffmarc Who do you have Medicare Advantage with? They are typically bad except for retirement sponsored plans (insurance administers but retirement plan pays) or Kaiser. UHC is the worst in percent of denials.

@jim18
I am with Kaiser north California. There are a lot of Kaiser doctors in the Bay Area to choose from. My oncologist was trained At UCSF and has participated in a lot of trials.

@ededed I'm in the application process for HBOT and it appears I'll be approved, but my current issue is that I have a level of bowel frequency and urgency that disallows my being locked up anywhere other than near a toilet for as long as two hours (I had six bowel movements between 3:45 A.M. and 9:30 A.M this morning, but then they stopped and I was able to attend a church service uninterrupted). I have written my gastroenterologist for help with a solution. He was reluctant to prescribe Lomotil at last visit due to its being a controlled substance, but Imodium is inadequate for me at this point. At my initial HBOT consult, the PA commented that they can take care of the bleeding and they can "help" with frequency and urgency. The Mesalamine suppositories I took in April worked pretty well, but I'm taking them again in June and they haven't affected me yet. I'm in my last two weeks of eighteen months of Orgovyx.

@jeffmarc I think my diagnosis shocked my PCP into action. He was very reluctant to send me to a urologist, but once I shared my biopsy and PSMA PET results, he started giving me anything I've wanted or needed in the way of tests, referrals, or meds. I have Aetna Medicare Advantage through my wife's former employer. They have only denied one treatment, a compounded medication for radiation proctitis, and it looks like they're going to approve hyperbaric oxygen therapy after my PCP's referral. I just need help getting the bowel settled enough to tolerate the length of isolation needed for treatments. Most of my updated treatment information comes not from my medical team but from you and others in these various support groups. I appreciate you!