Beware the siren song of the greedy urologist.
For me, it took a while to get up to speed on everything prostate cancer. Just before the pandemic my PSA was rising and once it got to 7.4 I had a random biopsy performed that came back negative. Over the next several years I changed jobs, moved, and since the biopsy was negative, I put any concerns about prostate cancer behind me.
Once I was re-established in a new town, with a new job, I began seeing a new Primary Care doc who suggested running a PSA test. The test came back 8.2. I was unmoved. So much so that after giving me the result the doc asked, “Aren’t you concerned?” I explained I had already had a biopsy that came back negative and so I wasn’t too worried. He began to explain how random biopsy’s miss prostate cancer all the time and that I would probably benefit from a Urology referral. Still, I wasn’t convinced. I couldn’t imagine/accept that in this day and age we still don’t know what we’re doing here.
Six months later I was back in his office for an unrelated mater and in passing he asked “Why don’t we run another PSA test just for fun?”. It came back 9.7. The rise of 1.5 over a six -month period got my attention so I took the Urologic referral who ordered an MRI.
My first clue something wasn’t right was when the Urologist had his admin call with the results of the MRI to say something was concerning and, as such, the doctor had placed an order for surgery and scheduling would be reaching out shortly. I tamped down my irritation/anger that such a serious result would be delivered in such an ambiguous/flippant manner and waited for the Urologist to call. He never really called. Instead, I was invited to schedule a teleconference, and then, after paying another co-pay, was connected via the clinic’s protocol.
While preparing for the teleconference I attempted to download the results of the MRI from MyChart and noticed only one page of a three-page report had been uploaded. Once the teleconference began, I explained I didn’t have the full report. The Urologist said, “I do”. I explained yes but I want the complete report and asked to have his staff upload the missing two pages. Once again, he said he could see the full report and the problem must be a technical issue on my end. (It wasn’t a technical issue on my end) He was resistant to provide the full report. I mentioned I was pretty sure he was obligated by law to provide the full report. He blankly stared back at me. So I moved on… stumbling around the information I had with questions and looking for direction. I asked “what does “non circumscribed mean?” He said “I asked them not to put that in there” and mumbled something minimizing its’ relevance. Turns out (after I obtained the full report directly from Rayus Radiology) the second and third pages of the MRI report contained the more serious PIRADS 4 data and opinion. In response to a series of my questions he answered, “these things are subjective and I don’t get into the radiology”. “All I’m looking for is the score.” “It’s the pathology that’s going to tell us what to do”. In parting I asked if there was anything else I should know. He answered there was not. In the final analysis no meaningful information had been proffered.
I spent the next three weeks reading the MRI report and learning everything I could about every word. Turns out there actually is something else I should know. It relates to a PIRADS 4 lesion located in the anterior transition zone at the apex just anterior to the urethra that abuts the anterior pseudocapsule over 6mm.
Long story short, after running a background check on this guy, I found out he doesn’t have any real experience with prostate cancer and was renting the “special equipment” to perform the biopsy. And since he was renting the equipment, was attempting to line up several patients on the same day to perform the biopsies. Which explains why he was unable to answer my questions, didn’t want me to have the report (as it’s obvious he was over his head) and assumptively scheduled the biopsy before consultation.
You can imagine the relief I felt after connecting with Mayo.
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I hope you don't give up and look for a medical oncologist that will be able to work with you and if necessary with a urologist he may recommend. I have a neighbor who had an enlarged prostate and a laser procedure to open the restriction. The biopsy of the tissue removed showed he had prostate cancer and subsequent scans showed it in his vertebrae and pelvis. A biopsy of the prostate was not done but he was referred to a radiology oncologist and hematology/oncologist to work together with the radiologist. Best wishes for your treatment and finding a good set of physicians who are not threatened by questions.