THERE WAS NO RESPONSE TO AN UPDATE REMINDER IN 2020 SO THERE IS NO UPDATE.
Random PSA revealed 13.9. I thought it might have been the pizza and beer from the night before because I had no symptoms. Saw Urologist that did DRE and felt normal but later did a biopsy and revealed the truth that left half of prostate had aggressive cancer and 2 more docs agreed prostate needed to come out and recommended nerve sparing technique using either robotic or open. I elected for open from best guy I could find. Experience matters on this and wanted the best shot at quality of life going forward. Fortunately, Dr Partin at Hopkins had an opening and 2 weeks later I got radical prostatectomy done. I'm 2 months after and life is getting back to normal albiet a few manageable complications. I have to wear pads and don't sport wood with pills yet but I'm hopeful sex life will improve and just tried Bi-mix injection and had enough to penetrate. Good trend and beats the alternative to 6 feet under. Charlie D
It's been 15 months since my last report. So much has happened post RP in June 2017.
The surgery is no joke!! Very painful. I have a fairly high tolerance for pain and tried to recover with just Tylenol. I don't recommend that. You need to get up and move around instead of pain avoidance sitting. I ended up getting a blood clot in my catheter as a result which backed up my urine flow and had to make a trip to the emergency room to get the catheter flushed out.
Four days after surgery I got the welcome news that the cancer had been contained in the prostate and that my margins were clear. My wife and I were so relieved we wept. Because of my catheter blockage the doctor wanted me to keep the catheter in place an additional two weeks. Ugh!! When it was removed I had very little continence and I went through five pads a day. This gradually got better but it took a good six months before I didn't need pads. I highly recommend doing kegel exercises as soon as able prior and post surgery. There are phone apps to help remind you. Since I thought I was out of the woods and my Dr. and staff never suggested otherwise, my life started to get back to normal aside from ED. They suggested a PSA test at three month intervals. I was expecting to be near zero PSA but to my surprise I had a 4.5. That number was unexpected and disturbing to say the least. A retest confirmed that it was getting worse exponentially and my local doctor said I needed to get on a plane and go to mayo clinic as soon as possible because they have really good imaging that can help determine where the cancer had migrated to. I can't tell you how pissed off at the follow up care I got from Johns Hopkins!! I was a fairly high risk patient that needed better follow up! Also, when I let JH know that my 3 month PSA was 4.5 they did CET and bone scans. They came back negative!! WTF?! Had I not gone to Mayo for the pet scan, I don't think I'd be writing this right now.
Fortunately, there was an opening and I was able to get in for a Choline PET Scan at Mayo within two weeks. It lit up a couple of lymph nodes near the prostate bed. Another stroke of luck was that I became a patient of Dr Kwon. He is literally one of the best urologists in the world and I credit him with saving my life. He recommended surgically removing The cancerous lymph nodes and undergoing a seven week course of radiation of the lymph area and prostate bed which I did. I'm also on Androgen deprivation therapy (Lupron) which shrinks PC and my PSA is currently undetectable. I will be going off Lupron at the 9 month point following 2nd surgery and radiation with follow up Choline PET scan. If PSA goes up again, I'll be on ADT for life but I'm very hopeful that Dr Kwon's curative approach works and I'll move on with my life aside from regular PSA and PET scans. Because of radiation and Lupron, I am not hopeful that I'll ever achieve a natural erection again so I've opted to have a penile prosthesis implant. Coincidentally, the PIP surgery is scheduled on 9/11. The day the twin towers fell will be the day I resurrect my erection with a 2 tower prosthesis in defiance to terrorism and this disease. Follow ups to follow.
Charlie's e-mail address is: charlesual AT aol.com (replace "AT" with "@")
NOTE: Charlie has not updated his story for more than 15 months, so you may not receive any response from him.
