Following my initial PC diagnosis five years ago, by a "very well-respected" urologist at UF Health Urology Department in Gainesville, Florida, a UF medical school professor specializing in prostate cancers and all the latest types of prostate surgeries, I was referred for a CT scan and a whole body bone scan to determine whether metastasis was present.

The CT scan of the abdomen revealed no organ metastasis, but the bone scan found two metastatic lesions on my ribs. After the positive bone scan findings, the UF Health urologist/surgeon stated he would not/could not perform RP. He instead referred me to the UF Health medical oncology and radiation oncology departments for further treatment. At the time I was advised by my PCP the diagnosis of bone metastasis was probably a "death sentence." Things looked pretty bleak at the time.

Four years prior to this PC diagnosis I was involved in a serious bicycle/auto accident while visiting Miami. I was struck from behind while riding my bicycle by a distracted driver, probably traveling about 50-55 mph. I sustained a severe TBI, multiple rib fractures and shoulder fractures, as well as a variety of other injuries. After months of treatment with a neurologist, orthopedic surgeon and physical therapists, I recovered from these injuries, moved on with my life and resumed normal activities.

Following my PC diagnosis I immediately began reading everything I could find about prostate cancer, the various diagnostic tests and scans, prostate cancer treatments and all the likely outcomes. The various medical professionals at UF Health were not being particularly informative. While reading about whole body bone scans I found an obscure article mentioning "false positives" for metastatic lesions resulting from PC; the article noted the possibility that various forms of bone abnormalities, specifically things like healed bone fractures, can be mistaken for metastatic lesions.

I mentioned the possibility of false positives from bone scans to my PCP at the time. He suggested I might want to discuss this with the UF Health urologist/surgeon before I began treatment with the UF Health medical oncologist and radiation oncologist in the next few weeks. I then called the UF Health urologist/surgeon's office to voice my concerns, but was curtly told by his nurse/PA it was "almost impossible" their diagnosis was incorrect.

My PCP was understandably concerned by the UF Health urologist/surgeon's PA's dismissive attitude. He then insisted I contact my orthopedic surgeon in Miami, the one who treated me following the auto/bicycle accident three years before, to discuss the possibility my healed rib fractures might result in a false positive for metastatic lesions on the recent UF Health bone scan.

I immediately called the orthopedic surgeon's office in Miami, discussed my concerns with his office manager, then faxed a copy of the recent bone scan findings to his office. The following day his office manager called me, stating the orthopedic surgeon felt my concerns were "valid" and "needed to be looked at" before I began treatment. His office manager offered to mail digital files (on a CD) of all x-rays and scans the orthopedic surgeon had done three years before, directly to either the UF Health urologist/surgeon or the UF Health radiologists.

I then called the UF Health urologist/surgeon's office to see where the pre-existing medical records from the Miami orthopedic surgeon were to be mailed for review. Again the UF Health urologist/surgeon's PA said it was "unlikely the bone scan findings were wrong." She maintained my very high PSA, the biopsy results and Gleason scores clearly indicated such metastatic bone lesions were to be expected in my case.

I persisted, so she consulted with the UF Health urologist/surgeon. The UF Health urologist/surgeon believed the bone scan findings and CT scan findings were correct. He told her they "did not need to review the x-rays and scans" from the Miami orthopedic surgeon's office, and they "should not bother sending them" because he wouldn't look at them.

When I continued to protest, she reluctantly agreed to schedule a follow-up CT scan of my chest and ribs, just to clarify the original bone scan findings of metastatic lesions. The follow-up CT scan of the chest and ribs a few days later also confirmed the original bone scan findings of "metastatic lesions." The UF Health urologist/surgeon's PA advised me the matter was closed.

My PCP was still concerned, stating the UF Health urologist/surgeon and both UF Health radiologists really needed to look at the old x-rays and scans performed three years earlier by the Miami orthopedic surgeon. Considering the gravity of the situation, it would be a simple matter to compare both sets of scans to make a proper diagnosis.

I made an office appointment to speak directly to the UF Health urologist/surgeon. I told him I wanted the old x-rays and scans reviewed. He again flatly refused, saying "don't bother sending these things to me, we're not going to look at them." He further suggested I was trying to "avoid reality" and I should just "accept my diagnosis." He then angrily walked out of the consultation room. Subsequent calls by my PCP to his office went unanswered; he refused to discuss the matter further, and never saw me again.

My PCP then suggested getting a second opinion.I called the only other urologic surgical group in Gainesville to make an appointment; they told me they "were not accepting new patients," the soonest they could see me was in six months. I expressed my concerns to their office manager, but she warned me it was "unlikely" a well-respected UF Health urologist/surgeon and two highly-qualified UF Health radiologists could be mistaken. Furthermore, she advised it was a bad idea to delay my treatment with UF Health medical oncology and radiation oncology, given the seriousness of my PC diagnosis.

So, I then basically gave up. After being told by all these "well-respected" specialists my concerns were totally unfounded, I accepted their advice and began my treatment with the UF Health medical oncologist, and the radiation treatments.

Two years later, after eight weeks of daily radiation treatments and 24 months of ADT, I still hadn't experienced any bone pain or exhibited any other signs of advancing metastatic bone disease. Apparently, surprised I was still alive and improving, the medical oncologist ordered another whole body bone scan. This second bone scan, paying particular attention to the areas where the metastatic lesions had been noted before, concluded: "no bony metastasis found."

Afterwards both the UF Health medical and radiation oncologists very reluctantly admitted to me the "well-respected" UF Health urologist/surgeon, the doctor who had refused to even look at the pre-existing x-rays and scans from the auto accident, as well as the two UF Health radiologists who interpreted the bone scan and subsequent CT scan of the ribs, were "apparently mistaken." That was over two years ago.

My most recent medical oncology visit this past week, with my new UF Health medical oncologist (the first one retired years ago), revealed my PSA has now increased to 0.26, up from 0.02 six months earlier. My PSA had been undetectable (<0.01) for the past few years, but now it's rising and my new UF Health oncologist tells me he's "concerned." He suggested repeating the PSA test in two months, instead of waiting the usual six months, to determine if my PSA is heading higher, and how quickly. The medical oncologist discussed a variety of other treatments, if and when my PSA rises above 1.00. I'm very worried.

Something tells me this new UF Health medical oncologist believes my PSA will continue to rise, though he wouldn't definitively say so. He further stated I "probably should have had the RP surgery," adding any future treatments would not be "curative." All this uncertainty, particularly considering everything I've experienced over the last few years, has really put me over the edge. I don't know who to believe or trust any longer. I'm not sure what I should do now.

I'll only add that the original "well-respected" urologist/surgeon left the UF Health system and moved to New York a few months following my unfortunate experience with him.

Sergio's e-mail address is: sergorte3 AT aol.com (replace "AT" with "@")