After feeling a "ridge" in my prostate, my first urologist recommended a biopsy. I'd been referred to him by my PCP to verify that the microscopic hematuria detected via a blood test was not something more serious, which it was not.
Some weeks later the TRUS biopsy came back 2 cores out of 12 positive (5%/15%). I was sent to the multi-disciplinary team at the hospital, who first advised me that I was a good candidate for Active Surveillance. However a subsequent MRI found a 1.5cm mass in my prostate. A later UroNav biopsy found one core out of 6 positive at 10%. My new urologist informed me that he felt it should be treated but that it was not an emergency.
I'm currently scrambling to find out everything I can about this nasty business. I've joined a local support group, which is excellent, as well as a couple of online forums. This YANA site has been a treasure trove of info, and I've corresponded and even spoken with a couple of the mentors here.
I'm intrigued by HIFU, I must admit, and would love for it to be all I'll have to do... but don't count on it. This week I'm sending my biopsy slides to Dr. Epstein's lab at Johns Hopkins.
To be continued....
Dr. Epstein confirmed the G6 on my UroNAV core two weeks ago. The only change was a slight increase in volume to 20%. Not sure why they didn't send the 2 positive cores from my TRUS biopsy, but there it is. On the 26th of this month I'm going to see Dr. Duke Bahn for a color Doppler ultrasound. Hopefully his opinion will help my case for AS! Stay tuned.....
On March 26, 2019 I had a color Doppler ultrasound with Dr. Duke Bahn in Ventura, CA. Dr. Bahn is very nice, intense as befits the situation but he does have a sense of humor. It's subtle, but it's there. The CDUS is very slightly unpleasant but all in all not bad - like a biopsy without the needles. He did his thing and then had me watch a monitor across the room where he pointed out the lesions in my prostate and the hits of color from my heartbeat.
In his office afterward we went over his findings, and he confirmed that my cancer was organ-confined, 3 lesions in the apex, and that in his opinion I was at low risk and could go on Active Surveillance. He also drew blood for PSA and called me personally two days later to give me the result: 1.8. This is up slightly from the 1.4 reading in August of 2018 but he said that values fluctuate and that he was not concerned.
Dr. Bahn recommended PSA testing every 3 months and a repeat CDUS at 6 months. Thereafter it would be once a year.
After my fusion biopsy in January my urologist indicated that I needed treatment, though not necessarily immediately. Dr. Bahn's advice clearly differs. My plan now is to seek out another urologist within the Kaiser system where I have my coverage, and get a second opinion.
On another note, my wife and I attended the mid-year Prostate Cancer Research Institute conference at the Los Angeles Int'l Airport (LAX) Marriott yesterday. Four world-class physicians spoke and it was a bargain at 30 bucks. They even threw in a free boxed lunch (all of which paid for no doubt, ahem, by the Pharma companies hawking their wares in the lobby...).
I recommend this event to anyone able to get there. And this is the small one. In September their yearly conference is held at the same venue on the first weekend after Labor Day. I understand up to 3K people attend, and in addition to Drs. Scholz and Moyad, the organizers, they've scheduled Dr. Lawrence Klotz this year. Among many other top docs I'm sure. If you register now it's only 50 bucks. PCRI.org.
In early May I consulted another urologist within my network. He reviewed my imaging studies and we had a thorough consultation. His recommendation is Active Surveillance, which puts him at odds with my first urologist as well as with Dr. Bahn.
In June I'm going to see a urologist at City of Hope, which is an NCI Comprehensive Cancer Center. Will update after that.
I visited Dr. Clayton Lau at City of Hope yesterday. He seconded the recommendation of Active Surveillance. I now have 2 urologists and one radiologist on this side of the issue, with only my original Kaiser urologist urging treatment. Rather than calling it case closed I'm planning to see one more Kaiser urologist - recommended by Dr. Lau - and hope he concurs with the AS crowd. At any event I will expect another PSA test within a few weeks.
If there's anything I've learned in the 10 months since I was diagnosed it's that opinions on everything from tumor size, spread and severity to treatment decisions (including recommendations against) vary dramatically from one physician to the next. In my experience this has been true of urologists, radiologists and pathologists.
I have now visited 5 urologists and one radiologist (Dr. Duke Bahn) for opinions. My most recent was at UCLA, which is at last report the #7 hospital in the country for urology and perhaps the best in California. All but my initial physician advised me to stay on Active Surveillance.
Along the way I had my mpMRI of Dec. 2018 read by two additional radiologists, including one at UCLA. These two contradicted the PI-RADs 5 estimate of the original reading: they both assigned me no score at all.
So as of now I am officially on AS. My advice to those starting out on this trek is to take nothing for granted and seek second opinions, even thirds or fourths if anything is in doubt.
In May of this terrible year I had an MRI that was labeled PI-RADS 3. I elected to have another biopsy, my 3rd, and on Election Day had 18 cores taken including 4 from the area of interest that had been the home of my previous positive cores.
The result was a single positive G6 core at 10% involvement. Given my low recent PSA of 1.6, my urologist and I have agreed that I can stay on AS for now. Not exactly sure of his protocol for MRIs and biopsies, but other than PSA readings I don't think they'll be doing anything to me for at least another year, perhaps even 2.
I do however continue to be bedeviled by BPH. The Urolift I had in October of 2019 was ineffective. I'm currently considering either a REZUM (more likely) or a TURP (if I must). But anything like that will have to wait until after I'm well vaccinated.
Best of luck to all of you in these trying times.
Things in the PCa department remain the same. My latest biopsy 11/3/2020 showed only one positive G6 core at 10%. In consultation with my urologist we've agreed to continue Active Surveillance.
My main issue continues to be BPH. A cystoscopy on 7/19/2021 revealed that one of my Urolift clips had become encrusted and was sticking out into my urethra. My uro once again recommended a TURP, however as I remain concerned about permanent SEs I'm currently pursuing an AquaBlation treatment, which is done by only one urologist in this area (although it is FDA approved).
We'll see what the new year brings!
My March 2022 PSA reading was 1.9, so all good on that front. I finally decided to do something about my BPH, and after exhausting all other possibilities went ahead with a TURP one week ago, 6/6/22. It was a routine surgery and I had a catheter for 4 days. and am now in the recovery phase, which my urologist tells me can take up to 6 weeks.
As the guy falling off the Empire State Building said, "So far, so good."
Oh and I forgot to mention just now that my doc was able to remove the encrusted Urolift clip plus 2 of the others. So there's one more in there that he wasn't able to find. I guess this is a good thing.
My PSA continues to be very low, 1.0 at last check. No other news on the PCa front.
Art's e-mail address is: art_schnabel AT yahoo.com (replace "AT" with "@")
