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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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Great job! It’s amazing how these people only see dollar signs.
I was diagnosed with prostate cancer after a biopsy. I probably should have asked for another.
Worst decision I made was allowing a local urologist to do the surgery.
In my wildest dreams I never thought I could be crippled by this operation. But lucky me.
No real idea what happened. Mayo looked at me and all of the files and said they thought I was not supported properly when they did the robotic surgery.
I am screwed. I have gone from a guy who lifted weights evey day AND walked my dog between 5 and 10 miles a day to a complete crippled old man.
Not sure exactly what I did wrong. I think it was not vetting the urologist.
I was told he had done lots of these operations. I should have gotten proof.
I have NO real life expectations. Can’t exercise so just slowly dying while sitting in a chair watching TV.
Oh yeah. I am 75 years old, still not overweight. I watch what I eat and try to do what I can.
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8 ReactionsI am very sorry for you. I ,too, look back on my treatment; prostatectomy, radiation, and now hormone therapy, with regret. I felt rushed, and uninformed about what I was facing. The thing is, it's done. I hope, someday, you can find a state of mind where you don't let this ordeal eat you up, and ruin the rest of your days. I wish you the best.
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1 ReactionThanks. I just have no
Life. All o can do is slowly die.
My deepest sympathies.
We laypeople are at the mercy of doctors.
If you get time, please check out on YouTube the exercises that you can do while seated.
Who knows? It might give you back some strength.
Best wishes.
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1 ReactionRogerc524, thank goodness you questioned this doctor and took the time to fully understand your situation. There are so many wonderful people in this world, but also a lot of unethical/evil people. Your story is a great testament for taking the time to research treatment, finding a center of excellence, and picking the best possible doctor at that center of excellence. So many people trust doctors because of their medical degree. I was one of those people, trusting doctors because they were supposedly the experts. This changed after my primary care physician failed to tell me that my PSA had been rising for over six years, doubling twice and almost doubling a third time. I found out only because I retired and decided to try and get off a statin that I was put on over 10 years earlier. I went to a cardiovascular management team and the nurse practitioner I was assigned to see was ironically a family friend. Fortunately, she reviewed my entire medical record and found that my primary care physician was incompetent (not the way she reported it too me, my own words) and failed to report the rising PSA. At that point, I stopped trusting doctors and decided to manage my own health. In the end, I went to a center of excellence (Mayo-Rochester) and was diagnosed with PC, Gleason Score 7 (4/3). I did research to find the best possible surgeon at Mayo and ultimately had a RP in November 2022.
All is well thus far, but as others have stated, you never know with cancer. Each day is a blessing.
Take care,
Jim
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3 Reactionssounds somewhat familiar I was rushes into the same am on the hormone now and thoughtfully it has been working psa undetecible of course there will be a next step and Intend to go to Mayo fir the rest.
Hey standtall, we’ve spoken before about our surgical ‘mishaps’…why don’t you get a copy of the Surgical Report - that’s the actual surgical narrative of the procedure. They HAVE TO give it to you. Perhaps it can shed some light on what may have gone awry and you can take this info to a neurologist or some other specialist and see if you can have some kind of treatment or therapy to alleviate the problem.
There is NO reason why you should be reduced to this invalid status by prostate surgery - NONE! If you absolutely must - a lawsuit should be considered and as a retired health professional I do not offer this advice lightly.
Sometimes doctors are only forthcoming when they are threatened with a lawsuit and if it absolutely has to be pursued in court facts will come out that have not been previously disclosed. Again, as a retired dentist and having attended many insurance seminars, the blunders that some docs try to hide are unbelievable!!!!
Anything is better than sitting there waiting to die…F***K THAT!
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2 ReactionsYou did not see an oncologist?
This is a great idea. I have never been surer. Just not my style. But I am so frustrated I may try this. Not exactly sure how to proceed however.
Contact the Dr who did the surgery and ask for a “surgery report?
Then try to find a lawyer who will help? All new to me.
Interesting I've been on hormone treatment for 12 months... just worrying now.... is hormone effective.
I've got stage 4 in bones, ribs pelvic
And lymph glands.
I would welcome your comments.
Thanks... Bomber