Living with Prostate Cancer: Meet others & introduce yourself

Hello. Five years ago I had an artificial urinary sphincter inserted in my groin. I had been experiencing urinary incontinence since a prostatectomy and radiation treatments. I was going through 3 or 4 regular size pads a day. My urologist offered to do the surgery and I consented. Good decision. I still use pads from time to time to catch the occasional leak but my quality of life has vastly improved. The AUS has a cuff that surrounds the urethra which is controlled by a bulb located in the scrotum. Squeezing the bulb loosens the cuff allowing urine to flow. Gradually the cuff closes again. It’s all quite painless. I have found it best to sit when I urinate. Fumbling around to find the bulb was too difficult for me standing at a urinal or toilet. Since my bladder can still push pretty hard at times, I urinate at regular intervals to keep urges to minimum. Nevertheless. I am very pleased so far with the AUS.

I'm 78 years old and I was in pretty good health until about a year ago when I started feeling very tired all the time. Then I got a PSA test and it was 41. By the time I started treatment three months later at UCSF, my PSA was 71. I had an MRI, a biopsy, two PSMA Pet MRIs, a CAT scan and a bone scan. My doctors now have a good baseline. My ADT treatments have gone well; my PSA went from 71 to 1.09 to 0.52 and I'll get the next result tomorrow. My side effects of hot flashes, night sweats, muscle loss, hair loss and lack of libido are quite tolerable, considering that the ADT has taken away the bone pain, fatigue and daily fear. I've heard that as the ADT goes on, I'll get joint pain and tiredness, but so far that hasn't happened. Right now, I feel thankful for all the medical people who are helping us patients.

I'm glad you're doing so well. Are you still using eligard and abiraterone?
I've got stage 4, gleason 9, mets to entire skeleton. I started treatment three months ago at UCSF, with Firmagon. Added Abiraterone and Prednisone about a month ago.

First diagnosed May of 2018. Stage 4, gleason 9, mets to spine. Pelvis, femur. My only yreatment has been abiraterone and eligard. Had prolia for a year and a half also. Psa has gone from 1230 to 0.02. Hopefully it continues

Hi dpybarra, just a bit confused by the implied timeline in your post. I'm thinking that your Radical Prostatectomy came after the fusion guided biopsy etc. Is that correct? Sounds like you have had great care and good results.

I'll add a shoutout for the multiparmetric MRI and the fusion guided biopsy (ultra sound and MRI) I benefitted from both. I had an anterior prostate tumor - and those are generally undectable by DRE (Digital Rectal Exam).

I had a RP in August 2021, at Duke Cancer Center. My PSA climbed slowly over a 3 year period, 2.5 to 4.2 with no enlargement or masses that were detectable through a digital exam. I had a needle biopsy first that showed two areas with Gleason 7 ( 3+4). Then had a prostate MRI that showed a couple more lesions that were contained within the prostate. Next I decided to have a fusion biopsy to gather even more information. I absolutely love the multidisciplinary team that consists of pathologists, oncologists, scientists, medical geneticists, and clinical trial teams. The multidisciplinary team allows you to meet with 3 specialists one at a time so that you can make or start to form a educated decision on the path or course of treatment. I was told that I am young (62), and I am in good health, thus it made since to me to have a RP (kinda one and done was my hope!) I also consider my surgeon a rock star when it comes to RP, Judd W. Moul, MD is an Urologic Oncologist at Duke. I was told that the nerve bundles were spared, and the seminal vesicles and, lymph nodes were left un touched. I was in the hospital only 24 hours before I was home. I did have some pain associated with the cathater and was pleased to see it go after two weeks. Before surgery I had 4 or 5 sessions with a pelvic floor physical therapist. I resumed visits with the pelvic floor physical therapist 4 weeks after surgery. I was fully continent 8 weeks after surgery, I attribute this to the sessions before and after surgery with the pelvic floor physical therapist. I was back to work in six weeks. I have had two follow-up labs (every 3 months) for PSA, they both have been 0.01 undetectable. They did start me a a Penile Rehabilitation program right after the catheter was out. This consists of using a vacuum pump every day for 4, 5 minutes sessions. I also take Cialis (tadalafil) every Monday, Wednesday, and Friday (I have not noticed that this does anything?) to help blood flow to the penis. I am starting to get erections on my own, but still soft not hard enough for penetration. My penis will double to triple on side, but still hang down. I did start with Trimix about a month ago, and know have full erection from the injection of Trimix. I know that thought of sticking a needle in your penis is scary! Trust me it is not bad, and I love the results. I only inject Trimix once a week, Saturday mornings with my wife (this has made me fell somewhat normal). So that is my story and I am happy to friend or talk to anyone who may have questions or just needs an ear to bend.

First diagnosed May of 2018. Stage 4, gleason 9, mets to spine. Pelvis, femur. My only yreatment has been abiraterone and eligard. Had prolia for a year and a half also. Psa has gone from 1230 to 0.02. Hopefully it continues