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John R lives in Minnesota, USA. He was 45 when he was diagnosed in December, 2015. His initial PSA was 1.30 ng/ml, his Gleason Score was 6, and he was staged T2c. His initial treatment choice was Surgery (Robotic Laparoscopic Prostatectomy) and his current treatment choice is Surgery (Robotic Laparoscopic Prostatectomy). Here is his story.

My journey started like most others, totally unexpected. Since turning 40 my primary doctor added DREs to my annual physical, and every year my results were the same; no abnormalities. At 44 my primary doctor retired and referred me to a new physician with a different view of prostate care. Because all of my previous DREs had been normal he went with a PSA test instead which came out at 1.4, well within normal limits. The next year my physical was the same, except my physician decided to reintroduce the DRE to the mix after attending a conference held by urologists which convinced him to not rely solely on the PSA results. The PSA results came back at 1.2 but the DRE discovered a hardening of both sides of the prostate, which resulted in a referral to the urologist for a second opinion. The urologist confirmed the result and scheduled a biopsy for the next week. When the results of the biopsy came back they showed cancer in two of the twelve cores (30% and 10%) with no evidence of PNI, Gleason scale 3+3=6, and accompanying PSA at 1.4. After a lengthy discussion with my wife and urologist, I decided to have it removed. Because of my high BMI (48.1), I had to lose weight to have a better chance of a successful recovery, so after dropping 60 pounds the nerve-sparing robotic surgery was scheduled then performed at the end of March. The pathology report came back as T2c, no extraprostatic extension, clear margins, PNI present, Gleason 3+4=7, and tumor mass less than 5% of the prostate volume. I spent one night in the hospital, then 8 days at home with the catheter (the biggest pain-in-the-ass of the whole ordeal). I was back to work within a month. Incontinence ended shortly after the catheter removal (I haven't used a pad since mid-May), but ED is still an issue (okay with vacuum therapy, but nocturnal erections are weak at best when they occur). Both of my post-op PSA tests have come back undetectable, with the next scheduled in November. I have expressed my concerns with the urologist about the positive PNI reading, but he says that not enough is known about the chances of recurrence because of it, and not to put too much worry into it.

This site has been a great source of knowledge of new treatments, actions and reactions for a disease that gets far too little attention considering the amount of lives if affects.

Thank you!

UPDATED

June 2017

One year after my surgery and still at an undetectable PSA level. ED is still present (even with a weekly 20mg Cialis), but the vacuum device therapy is ongoing. No real changes, so I still consider myself lucky to have caught it early.

UPDATED

January 2018

Nothing new, which is good. PSA still undetectable but ED is still a thorn. Cialis has been ineffective, but still pumping the vac a few times a week to keep it going. Working harder to drop weight and get back in shape before trying anything new.

UPDATED

December 2018

Three years after diagnosis and 2 and a half after surgery, still undetectable. ED still present, and has been a factor in ending my 20 year marriage.

UPDATED

April 2019

PSA still undetectable. Lost 70 pounds and still going.

UPDATED

May 2020

Another year and another non-detectable PSA. ED is still present but is manageable with injections. I'm still working on losing weight and living healthier as I work toward retirement.

UPDATED

September 2023

Still movin' on. Remarried 2020 and still living the good life.

John's e-mail address is: jonnie44 AT gmail.com (replace "AT" with "@")


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