Blood work for yearly physical resulted in a PSA of 8.3 so my family physician prescribed two weeks of CIPRO. This brought it down to 6.2 resulting in a referral to a Urologist. While waiting for my appointment I read up on PSA to see what the implications were. I understood my chances of having prostate cancer were somewhere around 25%. This left me with a very uneasy feeling.

Because of the length of time to get my appointment with a urologist and not understanding the nature of most prostate cancer, I decided to get a consult while in the states and possibly a biopsy. I ended up getting a 16 core TRUS biopsy that yielded three cores positive for adenocarcinoma, all G6 ranging for 5 to 15% involvement. Shocking news.

The physician in the states said I had time to evaluate my options that included surgery, radiation and active surveillance. When I did get into to see my physician in Canada, he reiterated my options: AS, surgery, radiation. I also got a second opinion here and active surveillance was recommended with the other two option also mentioned. I gave myself a month or so to make a decision and during this time continued to access relevant resources and contact various specialists, many of which were kind enough to weigh in on my situation.

I also contacted Prostate Oncology Specialists (POS) in LA to arrange a consultation as they specialise in PC. They arranged to have my original biopsy results sent to Dr Epstein at Johns Hopkins for a second opinion that resulted in a downgrade of one of the three positive cores to suspicious for but not meeting the criteria for cancer (now 2/16 cores positive). They also noted that a 3T multiparametric MRI and / or colour doppler ultrasound would be important if I chose AS.

Although leaning heavily towards AS, I had second thoughts after discussing my situation with a friend and colleague who was diagnosed at 49 with G6 low volume however was upgraded on surgery to G7.

I finally decided to go the AS route on the basis I was considered very low risk with my PSA density being lower than .15. It would also be subject to a negative MRI, negative CDU and confirmatory biopsy.

I had the 3T mp MRI in New York, the results of which were ambiguous. This gave me source for stress as there were two large "lesions" detected. I found out later that "lesion" does not mean "prostate cancer". I got second opinions on the MRI, both of which indicated a negative result. A colour doppler at POS was also negative. This put me more at ease.

My confirmatory biopsy was scheduled for late Sept, and went as good as can be expected. It was 12 core trus and focused on the suspicious areas with additional cores at the anterior area. Results came back with one core positive at 10% G6. My PSA was 4.3, down from the 5.6 at diagnosis.

I then realized that over the previous 7 months, I had spent significant time on this (and justifiably so), however I realized I could not devote this much effort on an ongoing basis. I had made my decision and it was time to move on, striking more of a balance. I continued to stay on top of my AS program, basically acting as quarterback and as long as I was still within AS criteria for low risk I was comfortable. My latest PSA in June 2015 was 5.8, up a bit but not a concern yet.

I would be remiss not to thank the organizers of this site. It has been one of my go to resources as it represents unbiased views from prostate cancer survivors and I cannot thank them enough.

The remainder of 2015 was uneventful with regular PSA tests every 3 months. I continued to monitor available resources for updates on relevant aspects of my journey...particularly making sure that a higher grade cancer was not missed and trying to decide what might be the best treatment when the time comes as I view AS as "buying me time".

In January 2016, my PSA test came back at 7.9 (a noticeable spike) however I felt what I thought was pain my perineum area. My Rad Onc suggested it was temporary and to wait until next PSA (I thought he would prescribe CIPRO). I started taking Celebrix for its anti-inflammatory properties. Next PSA was 6.7 so it came down however the overall trend is up.

I was coming up to my 2 year anniversary on AS so I figured the prudent action would be to have another biopsy. I met with my urologist who agreed but suggested to make it targeted as we knew from the two previous biopsies where the positive core(s) were from. Within two weeks I was in for my third biopsy and I got the results back a few weeks later.

To our surprise, there were no positive cores....negative. There were however two cores that were noted as ASAP by the pathologist. My Uros view was that this was good news. His recommendation was to start taking a 5 alpha reductase inhibitor to stabilize my PSA with the upside that there is mounting evidence that it slows the progression of prostate cancer. One of Snuffy Myers videos also mentions this.

In the path report, he noted that he was seeking a second opinion on the ASAP so I am waiting to hear back before I decide. If no bad news then I will start on Finisteride as its half life is short (so if I am having adverse side effects they should disappear right away after I stop taking it). I will update when I get the second opinion on pathology report.

Since my last update, I received the results of the 2nd opinion on the two ASAP cores and one ended up being 5% Gleason 6. So all in all I am not surprised and it appears that progression is slow. My PSA is now consistently between 6 and 7 so the trend is increasing albeit slowly. My PSA was 3 when I was 49 do the doubling time is around 7 years. It's coming up to 4 years on AS and I am very comfortable with the choice I made. I am still reading any updates on the various AS programs at medical institutions around the world. They are starting to get longer term data now which is consistently supporting AS as safe, even for young men.

I will probably go for another biopsy in two years from now. I haven't exactly followed the strict diet I promised myself I would follow when I started AS however I am planning to and will see if it translates into a lower PSA. Next PSA in a couple of weeks.

Since my last update my PSA has been increasing consistently by at least one point every quarter. In September it was 7.4 and in December it was 8.5. I was becoming concerned at this point however my concerns were not shared by my doctors. My Rad Oncologist characterized this as "stable" and my urologist recommended PSA tests every six months. I couldn't have disagreed more on both accounts. I objected to my urologist and he agreed to revert back to the three month PSA testing regime, however he didn't suggest any course of action that may help to better understand why my PSA was increasing so quickly such as a mpMRI. I did bring this up and he was somewhat ambivalent with the idea. I think this is in part because the institution where these services are provided do not have this capability.

So, I immediately started to compile a list of locations that offered a 3T mpMRI specializing in prostate MRIs. I had the MRI performed in February; the report identified two lesions that were consistent with previous biopsies, one being PI-RADs 3 and the other 4. Prior to my next appointment (and PSA results) I sent my MRI report to my urologist so he would be prepared for the appointment, however I did take a hard copy to the appointment.

At the appointment (March, 2018), I was informed that my PSA was 9.9, up again. I showed him the report which he read and said it was beneficial information. The only problem was that he didn't read the report that I had emailed him in advance of the appointment. This had to be one of the most frustrating times of my journey with prostate cancer. Based on my PSA alone, my Uro said its time to do something, specifically, surgery. He set a follow up appointment / PSA test for two months. I did bring up whether a biopsy would be beneficial however he didn't buy into this.

Since that time, I have been getting second opinions on my MRI report and looking into getting a targeted biopsy performed. I am also exploring focal laser ablation if the MRI supports this. I had two FLA specialists weigh in on this and both believe that I am a good candidate for FLA (they reviewed the CD of the MRI images)

Around May of 2018, I felt I if I was to stay on AS I had to rule out G7+ PCa by having a targeted biopsy performed. I also wanted to understand why my PSA had been steadily rising unabated from about 6.5 to 9.9. I arranged a targeted biopsy (in bore 3TmpMRI guided) by a well recognized physician in the US. 4 cores were taken, two each from the 2 leisons. The two cores from the apex lesion were confirmed as G6 so in some respects this put my mind at ease. The MRI also confirmed a prostate volume of 60cc and the presence of BPH. My last volume measurement a few years previously was 45cc therefore this increase is a likely a contributing factor to my rising PSA.

Since the 9.9 PSA result my next three were all lower (between 8.3 and 9.2) so things have stabilized. I have had a consultation with a very experienced surgeon "out of province" who feels I should stay on AS but if my PSA continues to increase he would recommend removal. Not sure I am on board with using PSA alone......He does not support anymore biopsies, targeted or otherwise. I struggle with relying soley on PSA so will have to think things through. Its been over 5 years on AS so, even though its been sometimes draining, I have been "side effect" free for that long and now 57. Its somewhat easier looking at this diagnosis at 57 than when I was 52 as prognosis is the same but it's five years later.

Throughout the summer of 2019 it was uneventful as I have learned to relax during AS. Nothing seemed urgent. My next PSA, December, 2019 was 11.4. This spooked me as it was a major increase from my last PSA. I never wanted my PSA to go over 10 before I had treatment because it technically puts me in the intermediate risk category, however also realized that PSA density was more important. My urologist recommended a MRI, I was looking at treatment options, however during this time I became aware of Tulsa Pro (which is a form of HIFU), developed in Canada and bow used around the world (except in Canada). I read the trial results and checked who was endorsing it and its pretty impressive. Mentioned it to my urologist and he was not too supportive but to be fair, he had never heard of it. However, This is a viable option I want to explore with much lower side effects than surgery.

I started actively exploring where I could get Tulsa Pro performed at the same time I was booked for surgery and a few weeks before surgery (which was to be out of province) COVID hit and surgery was cancelled / postponed. I am hoping to see if I am still a candidate for Tulsa....can't travel anywhere and in the meantime can't get blood work for PSA testing

Since last update my PSA went from 13.4 to 14.4 and then down to 11.4 and the latest (Aug 2021) was 12.3. Not great however, when you take into account prostate volume, PSA density is .17. In Sept, 2020, I had a 3T mp MRI performed in Sept, 2020 here in NL as we now have a machine capable of taking quality prostate mp MRIs.The MRI showed two leisons (both PI-RADS 4) and this was consistent with previous MRIs I had done with Dr. Busch (Prime Imaging) and Dr. Goldberg (Partners Imaging). I obtained a copy of the MRI on disk and sent it to Dr. Goldberg for a second opinion and his findings were consistent with Eastern Healths.

Another year went by and I had another MRI done here at Eastern Health (Aug 2021) and the results were that there was no progression of existing leisons or no new ones and no ECE. It was shortly after this that my urologist and I discussed having a targeted (fusion) biopsy done as it had been three years since my last biopsy. So on Oct 15, 2021, I had the fusion biopsy with three cores taken from each of the two known leisons for a total of 6 cores. The results were not what I wanted to see. Although the three cores from the right base were negative (but +ive for PIN), the three cores from the apex lesion were G7 (3+4). Cores taken from this lesion in the past were 3+3 (G6). The good news is that of the three cores, on average only 25% of the tissue was cancerous and of this approximately 25% was pattern 4. So a total core length of pattern 4 of 3mm.

I had always said I never wanted to be in the "intermediate" risk category but here I am. So its time to make a move although I am not in a panic sitiation. The nonograms are still markedly in my favour when you look at 10 and 15 year cancer specific survival (even if I do nothing). I would like a second opinion on pathology however this would be fighting an uphill battle and not sure what it would change. I got 8 years out of AS with no treatment, am 60 now and feel its time to treat this disease.

I am still looking at Tulsa Pro but also considering surgery as BPH has to be dealt with at some point. I understand that Tulsa Pro is actually being used to treat BPH on its own and also at the same time as treatment for prostate cancer. So this is something I will be looking into. Until next update, take care and good luck to you.

After reassessing things I realized that surgery was the best option for me. My PSA now consistently over 10 and G 3+4 (@ 25% pattern 4) puts me in the "unfavourable" intermediate risk category. The Memorial Sloan Kettering prostate cancer nomagrams (available online) show a moderate chance of adverse pathology post surgery. I just wasn't comfortable pursuing Tulsa Pro which is still in its early days. Surgery would give me certainty in the grade and extent of the cancer through the post surgery pathology report. When I asked my urologist when he could perform the surgery I was given 6 to 9 months. He stated that he was doing only emergency surgeries at this time and had limited OR time with no set schedule and I wasn't considered an emergency. When I left his office and had time to think about it, it dawned on me that with an intermedite / high risk cancer this should be dealt with sooner than later. Delays, in my view, would put me at further risk of missing the window of a cure.

In a follow up appointment with my Uro he then said that he thought my stage was T3 which meant ECE or extra capusular penetration was present which is not good news. Not sure what information he had which led to this comment but this didn't sit well with me. This was another higher risk feature. My whole view of Active Surveillance changed permanently and dramatically that day. I started looking at all other options to have surgery earlier including writing letters / emails to Minister of Health and Eastern Health here in NL, inquiring at US hospitals, as well as going to Halifax and getting on several surgery lists. Incredibly stressful time. The pushing I did here seemed to have some effect as I was given a surgery date of March 22, 2022.

The surgery went well with no complications. Two nights in hospital then home to recover. Catheter removed after 17 days. Immediate total incontenance however it improved on a weekly basis such that at 3 months post op I am pretty well dry using only 1 pad per day just for precaution. Will tackle the ED now. When I had my catheter removed I also met with my Uro to review post surgery pathology report. Mostly good news; lymph nodes and seminal vesicles negative, surgical margins negative however there was focal extra prostatic extension. Final pathology was G 3+4 (grade group 2) with 20% of prostate involved, 25% pattern 4. The ECE puts me at higher risk for recurrance and I will never know if I had the surgery two years previously as planned, if the ECE would have not then been present. This is the kind of impact of the COVID caused hospital shutdown that will cost lives and may result in more lost person years than COVID itself. I digress.

1st PSA after surgery was .013 which was not considered undetectable so I went back three weeks later and this PSA was undetectable. So good news.

I want to weigh in on my view on AS as it was my primary treatment. Men of younger age (50 to 60) need to be cautious as one of the triggers for going off AS is grade progression which by definition lowers your chance for a cure. I am an example of this....on initial diagnosis my cure probability was almost 100%, now its significanly less than this and the probablity of addition treatment is around 30%. The rational for taking this extra risk on is quality of life issues (risk of incontinence and ED). NO question I would have acted earlier (in fact I wanted to but for no access because of COVID).

Well, its been almost a year and a half since my surgery and PSA remains undetectable. ED showing slow signs of improvement and absolutely no problems with continance. Don't regret decision at all only (as I have stated previously) wish I had surgery earlier when the cancer was at an earlier stage (ideally when my PSA was less than 10 and stage was 2). But, all I can do is not think about what might happen down the road and live life to the fullest one day at a time.

Greg's e-mail address is: greg.mckenney AT bellaliant.net (replace "AT" with "@")