This is exactly what I am struggling with on behalf of my husband! At diagnosis, I became his researcher, advocate and counselor. Learned everything I could. At a general checkup last August, his PSA came back at 14. The previous year it was at normal levels, but the test was done for an insurance exam, so it is not in his medical records. They tested again 1 month later, and it was at 18. Being that we are with one of the worst HMO providers around, it was 3 months later that they finally got to the biopsy. Gleason score 7 4+3, T2c, localized. Surprisingly, the PetScan was only 2 weeks later and yep, cancer was there. The only treatments offered were surgery and radiation and a "Let's wait 2 months to have things settle before you decide." Even after telliing him it looked pretty aggressive. This was not acceptable to us, so we went and got 2nd opinions, found clinical trials he qualified for and looked at all the ultrasound and laser options available. Surgery and radiation consult appts. were scheduled about 5 weeks after PetScan. The obstruction, delays, difficulty of use and formatting issues in getting his medical records and images to send to the other medical offices was gobsmacking and seemingly deliberate! We found a promising treatment, one with less debilitating side effects, at clinical trial being held at a local CFE University. We planned to pay out of pocket and started the enrollment process. The doctor in charge, rather anecdotally, told me that he just been informed that this world-class University cancer center, at the behest of our HMO, had a "contract" with them to not accept or treat any of their cash paying members who wanted treatment. It proceeded along until the doctor at the University fully ghosted me. Wow, I mean just wow! Rather criminal of them all, I'd say. Then on to getting evaluated for TULSA-Pro, which was his treatment of choice out of all the options. The doctors at that med center finally, after we were all stonewalled and ignored, just got the medical records on their own. We had to go to a local imaging center and pay for the MRI, only to have them tell us there were new spots on the MRI that were not on the PETScan, but weren't able to tell us exactly what it was. So, we opted for surgery and were surprised to get it relatively quickly scheduled. It is next week. My husband told the surgeon about the MRI (which we had on CD) with potentially new information and surgeon says to just come drop it off. Um, but where is your office? They don't list those things for you. 2 days until he got the answer. He was sent to the wrong location. Took him another 2 days to talk to the right person to find the right location. Because the company is its own insurance provider and medical system, accepting this outside medical record was an unknown and highly irregular circumstance and he was sternly told how much this stressed everyone out. They have had it for a week, he put in a follow up and has heard from no one. In the last 8 months, all they have done is the 2 PSA's, the biopsy and the PETScan. He is currently not scheduled for any pre-screening or testing before surgery next week, which indicates they are going to operate simply based on the old information without regard to any changes that may have occurred in the last 4 months. I would lay money on their response being "We'll just deal with anything else later", leaving my husband to further suffer through many more (and you guys know they all are) awful treatments. Being self-employed, we had almost no choice but to have them as our insurance but up until this diagnosis, he has been exceptionally healthy, so it wasn't a problem. We now refer to this medical system as the "Medical Industrial Complex Cartel". No complaining as they also are embedded in the State Insurance Office. So, to get back the point, he is nothing. Nothing to, and in, this process. It was a favorable prognosis in January, but now his whole future is up in the air. Your last 3 paragraphs are spot on, beautifully written and heartbreaking. I just realized how much I needed this outlet; he doesn't want anyone to know and finally, just last week, breezily told our daughters, his mom and brother about his "outpatient, home-the-same-day surgery" so I have been holding his confidence in for the last 4 1/2 months. No one, NO ONE! should have to be treated this way, especially by an entity that takes A LOT of your hard-earned money to do it to you, by their choice! They could offer better care because it is out there and available. I wish us all the strength and fortitude we need to get through it alive... Cheers.