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What is the average age of the gentlemen on here?

Prostate Cancer | Last Active: 4 days ago | Replies (351)

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@cirrussantafe

I'm a 52 year old hispanic; I was diagnosed in June of 2022 with prostate cancer, there were no previous cases of prostate cancer in my immediate family. I went to the ER one day for some abdominal pain, the doctor did an MRI of abdomen/pelvic area and found that I had an umbilical hernia but noticed on the MRI that my prostate was slightly enlarged which tends to occur as we age anyway; she said she'd order a PSA test as I hadn't had one before that I was aware of. The PSA came back high at 29; I then saw my primary doctor who did a digital rectal exam and was able to feel what she thought may be a nodule, she referred me to a urologist. The urologist also felt the same nodule and scheduled me for an ultrasound needle biopsy in which 9 of the 14 samples taken came back as cancerous, the highest Gleason scored being 4+4=8. I had not been exhibiting any signs/symptoms of prostate cancer that I was aware of. Due to my fairly young age and aggressiveness of my cancer, the urologist recommended and discussed w/me a Radical Prostatectomy; she also referred me to Mayo Clinic for a 2nd opinion as well as to a radiation oncologist and medical oncologist for their opinions. The radiation oncologist recommended radiation and hormone therapy, the medical oncologist said both RP and radiation/hormone therapy were viable options. All doctors explained to me pretty thoroughly I believe, the side effects and pros and cons of all; it was a lot of overwhelming information as you all know. In the meantime, the urologist scheduled me for an CT scan of abdomen and a bone scan. I asked the radiation oncologist about a PSMA scan and he said that it was actually newly available in Santa Fe, NM where I live; after a bit of back and forth with my insurance, I was approved for a PSMA scan. The CT, bone scan and PSMA all came back fine. In my consult with Mayo, in which they had all my records, the two Urologist's I spoke to via zoom also recommended a RP. After much research online, many questions to doctors and many sleepless nights, I finally decided on a Da Vinci robotic radical prostatectomy which my urologist/surgeon would perform; I also asked for an MRI of prostate before the surgery at the recommendation of the Mayo Clinic urologist to see if any spread outside the prostate was indicated; the MRI came back fine. I had a RP on Aug. 18, 2022 which went well; yes, recovery was painful and catheter was awful and I did get a MRSA UTI which took 3 rounds of antibiotics while I had the catheter and more antibiotics after the catheter was removed. After the surgery, the 7 lymph nodes removed came back negative for cancer as well as all the margins of the prostate. The Gleason score went from a 4+4=8 to 4+3=7. I did have trouble urinating after the catheter was removed in which the stream was weak and quite thin, felt like I was urinating through a pinhole. From my research I told my urologist that I felt I had developed a stricture, I was sent to PT for pelvic exercises, etc. to help with urinary incontinence and to see if my urinating issue would improve. The physical therapy did seem to be improving the urinary incontinence; however, I was still having issues urinating and one morning, I couldn't pee and panicked. I had to manipulate the end of the penis which allowed urine to come out slowly. (during the time of trouble urinating, the stream would also sometimes shoot in different directions.). My urologist scheduled me for a cystoscopy which is done in the urologist office; however, the urologist was unable to insert the scope into the urethra, she tried stretching urethra with metal devices as well as a wire device but no luck. ugh! She said she thought it may indeed be a stricture and scheduled me for surgery a few days later as she'd have to put me under to do a cystoscopy and MRI of the urethra. After the surgery, she found that I actually had developed a meatal stenosis which was causing the urinating problems. (meatal stenosis likely caused by the catheter). The stenosis was stretched out and so far I've been able to urinate fine; if it returns, the urologist said she can do another surgery which should correct it. I had my PSA test in November, 3 months after the surgery which thankfully came back as undetectable. I'll have another PSA test now in Feb. which I'm hoping and praying will also be undetectable. I'm still having some urinary incontinence 5 months after surgery but it's improved a lot. I use maybe one pad/day and I've been able to go without a pad some days as well. I believe the physical therapy and continuing the stretching of pelvic area muscles and the Kegel exercises have helped me. I also do walking daily and am hoping to get back to playing tennis. I unfortunately still have erectile dysfunction and at 52 years old, yes, it sucks but I'm dealing with it and am hoping for improvement. I've not yet tried pills, injections or penis pump but will be discussing with urologist. Sorry for such a long rant and maybe too much information but the more information we have, the better I believe. When I was first diagnosed I felt so lost and would have been grateful for any information from people that had dealt with prostate cancer already. I wish everyone well with their journey through this awful cancer.

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Replies to "I'm a 52 year old hispanic; I was diagnosed in June of 2022 with prostate cancer,..."

Not ranting; quite valid expressions of some of the challenges, disappointments and successes.
Congratulations on your initial postop PSA.

My 90 day postop was 0.19; so disappointing and I just began combination 4 mos hormone therapy (Orgovyx) and 2 mos of radiation to pelvic floor (WPRT).

Surgery Aug 15 2022; Gleason 9 & 8s final postop pathology of prostate.

So I think that you are doing wll with the most important element; cancer control. Hoping your PSA remains undetectable.

ED function can return over months, and apparently years, so keep good thoughts. My surgeon's office recommended "exercising the function" 2/3 times a week. I'm 72 and penis is slowly coming back to life, so to speak.

Kegel exercises and walking are good therapy for regaining continence control. I went to a few PT sessions and they were helpful.

Best wishes for continued improvement.

Your experience post RP sounds about as close to mine as I have read here and Thankyou for providing so much detail. I’m about 15 months post RP now and still experiencing meatal pain and discomfort which was never described as possible stenosis.
I did finally have a cystoscopy after a year of suffering.
Initially my pcp was chasing possible yeast infection which apparently I never had. After going to an infectious disease doctor and testing for any infection none was found, I had cystoscopy in the office( almost jumped through the ceiling) ouch!
He was able to pass the scope with some difficulty all the way to the bladder and reported scar tissue all the way up through. Because my stream is fairly good now I’m waiting and consulting long distance with Mayo urology in hopes of more improvement as I have noticed some since I quit trying to relieve the soreness with topical creams or gels which may have made it worse. The cystoscopy did not help irritation either. Incontinence is no longer a problem for me and lasted about 3 months. ED is still and honestly I don’t expect this to ever be back to pre surgery but still have some hope of some improvement without the drastic procedures I’ve read about. My age is 66, married, and had my surgery at 65 after 3 years of active surveillance.
Like you I never had symptoms but this is common.
I wish you well on your journey.

Thanks for the detailed review of your journey. I am in a very similar situation, just 3 months behind you. I am anxiously awaiting my first 3-month PSA check and am praying for a level of undetectable.

Best of luck with your continued recovery.