I work in Canada in a profession where exposure to toxins presents the risk of many occupational cancers, prostate among them. As a precaution we screen regularly, often earlier than the general population.

In 2020 I asked my GP to check on the source of my frequent urination, which had been a problem for years but seemed to be getting worse. She took a PSA and said it was nothing to worry about, but we should re-check in a few years (I was 44) since I didn't have any family history of prostate issues. The value (which I never received until years later) was 3.96.

In 2022 I started some screening for the variety of occupational cancers my team is at risk for. Long story short...during a 6 month period I had many blood samples taken and with each one the lab accidentally processed a PSA. The numbers started in August 2022 at a 4.3 and increased each time until I was at a 6.3 in March of 2023. This had prompted a referral to a urologist and I was recommended to get a biopsy in March. I also had a f/t PSA of 0.03.

Biopsy completed I attended an appointment for the results in April 2023. The urologist said 8 of 12 cores came back positive and that my gleason grade and score were 2 and 3+4 respectively.

I was frankly not expecting a positive result due to my age and it took a bit to process. He said it was intermediate risk and that we could wait awhile but he recommended surgery. He explained it was prudent given my age to reserve radiation in case I needed it later. He intimated that surgery had some side effects but did not elaborate. I had not done a lot of preparation since I assumed the results would be negative. I asked him if we were just going to surveil it and he said, no, action was required. He suggested we meet in 4 months with a fresh PSA and talk then. He said once my PSA reached 10 I should definitely do something.

I did some reading and talking to older friends who had been through this. Some of their stories made me a little more concerned about starting the process of treatment now instead of later, as well as his lack of communication of a concrete plan and providing additional information. The only thing he said was "stay off the internet". I am not a doctor, but have a degree in science and understand how to read and evaluate papers. It was very condescending, especially in light of his lack of interest in giving me first hand information during the actual diagnosis.

I asked the urologists office if he could just provide a few answers to my questions in the interim, since I wasn't goint to see him for four months. I essentially just wanted some additional detail from the biopsy path report (percent of cancer in each core, percent of Gleason 4 present, perineural invasion etc).

The receptionist said we would just book a quick appointment and asked me to do another PSA before the meeting. My last PSA in late March was 6.3 and this PSA in mid-April was 8.3. I'm meeting with him in two days.

In the interim, partly to quell the concern of friends and family, and partly because I am a little resentful he took essentially zero time going through the diagnosis with me, I reached out to a leader in the field in a neighbouring City. I'm in Canada so it's less consumer-oriented and I had to pull strings to get connected. That urologist has agreed to review my file and provide a second opinion.

Essentially, meeting with first urologist in two days to get answers and likely to book a surgery. The day after I'll connect with the second urologist and if his direction is the same I'll just proceed with surgery with the first.

Update to follow those appointments.

Hi All

First update since original submission.

After sharing with my friends and family the confusing treatment plan I was urged to get a second opinion. I was able to pull some strings and get one with a highly renonowned urologist in our area (again, not sure why my GP didn't refer me to him in the first place).

In the interim I had an appointment with my original urologist to get more information so that I might better understand how he arrived at his decision to not surveil but postpone treatment until I reached a PSA of 10. He originally said surgery was necessary but not to rush because of complications.

During this meeting I asked him about my biopsy report which he shared showed a max core involvment of 50%, 8 of 12 positive and a Gleason 4 only in 10% of my total sample. He said this was nothing to worry about, and that he was sure it was fully contained to my capsule. He said we would meet again in 3 months to check in and see how my PSA was. He also indicated that my PSA had only gone up 2 in 3 years. I had to remind him that I had a 4 in 2020, a 4 in 2022 then up to 8.3 within 8 months. He started the clock in 2020, although everything appeared stable for the two years in between.

I left feeling like perhaps I was being too panic-y...he reminded me to never go to the internet.

Fast forward two weeks later, I finally get in with the second opinion. The doctor takes me in and reminds me that this is a favour because of my connections in the community. He says that my referring doctor has not sent in any of the reports and hopes I have a good history. I say I do and begin sharing with him while he is simultaneously searching for my online patient record (which he finds, with path report).

He stops me mid-sentence and asks why I haven't pursued treatment yet. I say my doctor didn't recommend starting for awhile. He asks what the radiation oncologist recommended...I said I never had a consult. He advised that that was against the standard of care, that he agreed that surgery was my best option but that his next action was to connect me with a radiation oncologist for their perspective.

He then asked if I had researched a bit on the internet. I said "yes" assuming he was going to berate me like my previous oncologist...instead he said "good" and said I would have an easier time understanding his treatment option because of it. He also said that my current urologist was likely postponing my treatment because the health network he worked in had just purchased a robot and they were training. He felt that I was a good subject for him as I was healthy and young and if the procedure required me to be under anaesthetic longer I would be okay.

He was visibly upset and said I needed treatment now. He said the standard of care was 35 days from diagnosis for my case and I was already past that. He offered to treat me with open RP; he also said if I preferred robot he would refer me to a great surgeon.

He went on to provide detail I hadn't heard before about the procedure. He said his stats were less than 5% incontinence at one year, but 50% ED at the same time. He said he has two surgeons in the room at the same time as well.

He also went into detail about my case specific risk and said I have an approx 48% chance of ECE, which my original doc never mentioned. To the contrary he said he was sure it was contained. He said he had good results with open surgery but wanted me to truly understand the numbers.

I thanked him and left. I talked to my family about it and I'm going to get him to do my RP. I assume I'll be getting it done in 4-6 weeks. I'll update when I have more info but I feel like I'm in much better hands.

I'm very disappointed in the state of health care in the province of Ontario...if I didn't have an elevated public profile to get access to second opinions in days this wouldn't have been possible and I would have had to wait months to get it done, while it potentially, or possibly, escaped the capsule.

Quick update....went in for open RP on Monday morning (July 18, 2023). Did bowel prep etc the night before.

Walked into the OR at just after 10AM. I woke up in the recovery room at around 130PM. The surgery itself took a little longer than the doctor anticipated and was closer to 3 hours than 2. I lost a significant amount of blood but they were still considering transfusion, so not that much. My drain was producing a lot of fluid. I eventually passed over a liter of fluid from the drain in about 45 minutes.

I was not in "pain" but I was in a significant amount of discomfort. The catheter was not draining. I told the nurse the source of my discomfort was just a significant pressure to urinate. I'm not one to complain so when she said that was normal I accepted it. I mentioned something about an hour later (still in recovery due to draining and blood loss) and she did a quick ultrasound, said the bladder was empty and there was nothing to do but she would let the surgeon know.

2 and a half hours after waking up the surgeon came to see me. He said it was a "very challenging" surgery. I told him I had no pain but was uncomfortable. He took a look, put the catheter in traction, took the drain off of suction and all of a sudden...things got a bit better. Not great, but absolutely tolerable.

I was moved up to my short-term room. The surgeon met with my wife and mysefl and told me that he was had such a challenge because the seminal vessicles and prostate were fused to my pelvic muscle and rectum. My wife asked why and he said he felt it was because of the cancer but only pathology would be able to confirm it. He said he only wanted us to prepare in case this wasn't done, and reiterated how upset he was with my previous urologist who had pushed this along without doing too much.

My total stay was two nights and since I was bouncing back I was released. I think a key was moving...I started walking 3 hours after getting into my room and didn't stop. Mysurgeon was amazing...he came to see me every morning before his surgeries (6am) and aftewards, around 5PM. He showed great compassion and care.

Hopefully we're done, but for now it's home with the foley and back to see my surgeon in 11 days for staples and catheter out, as well as pathology. Fingers crossed.

JUST UPDATING EMAIL TO davejablinski@gmail.com.

Dave's e-mail address is: davejablinski AT gmail.com (replace "AT" with "@")