@johnnyz I'll just reply on sexual function and incontinence prep before treatment.

First, everyone is different. The surgeon may have to take more nerves to get good margins, depending on your test results/pathology. Even with perfect nerve sparing, your response to a perfect treatment will be different from everyone else.

I had nerve sparing surgery 3 1/2 months ago. My continence and sexual function are ahead of schedule. I am feeling very fortunate. It's still a lot to deal with, but I know it could be even more challenging, so I'm grateful to make the progress I have so far. Still a ways to go.

Here is what I'd suggest:

• Sign up for Pelvic Floor therapist before treatment. Bladder retraining, advancing your kegel program and giving you additional exercises at the right time specifically for you. This is so helpful!

My incontinence isn't as bad as some others at this point in time post surgery, but I can't tell you how helpful it is to have a trained specialist helping you progress. I was a doubter because I'm not that bad. But, yes, it's a huge help.

• Get started on kegels Start doing kegels NOW before treatment. Don't wait. I use the Easy Kegel app, paid the $3 (worth it) and set up alarms and my own schedule. Make sure to learn how to trigger the right muscle! (that's where the pelvic floor therapist can help as well They can tell you if you are doing it right)

• Sign up for a Sexual Function therapist before surgery so that you can prep and then get in to see the specialist before too long after surgery.

For sexual function,

• Start a PDE5 inhibitor before treatment. I started taking Tadalafil prior to surgery. Many centers actually have you do this. My surgeon didn't prescribe it (the research does not say this has benefit), but I pushed ahead and asked my primary care doc to write me a prescription and he did that in a heartbeat. Super glad I did this.

I'll say this. I figured out how to overcome some initial muscle ache side effects from Tadalifil and have had no problems since (switched to taking it in the morning rather than at night). I also had a glorious stretch of being as functional as a teenage guy again. So, have some big fun before the big day.

•Second. I got a penis pump to see how to use it. It's so much easier to learn when you are fully functional. I ordered a Vacurect (not cheap, but easy to use, FDA approved and designed by a former PCa patient). After surgery and the catheter is removed, it's time to do pump therapy. (lots of posts out there on this and other options on pumps). You do this because post treatment, you no longer get erections. The pump action helps keep tissue from turning into scar tissue. It's a use it or lose it situation. Until you can get erections again, you need something to help.

• Restorex post surgery: I was a doubter. I never thought I would do this, even after all my pre-surgery homework. My sexual function doctor said I was a good candidate for a Restorex trial. It's stupid expensive, but I got the unit for free as part of being in the trial. I've been doing that for almost two months now. It's basically a penis stretcher. Why would you do this to yourself? Well, surgery often leads to a much shorter penis that can affect more than just your ego.

I was a doubter, but I can say this 100 percent. It works. I tried the pump post Restorex treatment and there was a big difference. I am actually bigger now, which was not my actual goal. It took a couple of months of doing the stretch ( 30 minutes a day) for any big noticeable change, but all of sudden, there it is.

Also, Before surgery, while you're at it, do some flaccid and erect measurements to know what you are prior to surgery. It's kind of like how big the fish you caught. You want an accurate number, not the fish story.

Good luck with your decision making. The good news is that there are so many treatment options and it is so much better to be on the other side of treatment. Still recovering, but feeling much better.

@johnnyz
While 7 of 15 cores is good to know it’s even more important to know what the Gleason Scores were on those seven cores. Were they all 3+3? Were some of them 3+4 or 4+3. Or any of them 4+4 or 4+5.

Any of those group of scores could mean you need different treatment. Was the cribriform Large or small? My brother had small cribriform And just had five sessions of SBRT radiation and he’s doing fine three years later. If it’s large cribriform But you only had one 3+4 and it was only 10% of four then you could actually hold off and do active surveillance. I know a guy who’s gone well over a year with large cribriform But only a 3+4 and many doctors have told them there’s no urgency and he’s just stayed on active surveillance.

If it’s a 4+5 or 4+4 then you want to get a PSMA PET scan to see if there’s any spread outside the prostate. In that case, surgery is not an option usually you want to do radiation.

How high was your PSA at diagnosis? The higher it is the more urgent treatment is.

I need a lot more information to really Assist you.

Are you a patient that could have focal therapy? A lot of that is based on how much it is spread and how aggressive it is.

Were any of these things found in the biopsy intraductal, ductal, large cribriform, Seminal vesicle invasion, EPE or ECE. (Extraprostatic extensions extra capsular extensions). They can make the cancer much more aggressive.

@johnnyz
I am 64 with 6 tumors (2 are gleason 7 with cribriform / 4 are gleason 6). My urologist/surgeon is Joseph Wagner (early DaVinci surgeon with 4k successful patient outcomes). Dr. Wagner ordered a decipher test to ascertain where I was on that scale: .72 (high). Dr. Wagner advised that I would be 'dry' in a year and that intimacy was tbd depending if nerves were impacted as the surgery commenced. I had a very good shot at nerve sparing - but not a guarantee. Dr. Wagner advised that either radiation or surgery were equipoise in efficacy (re: cribriform and high decipher) and referred me to his colleague Dr. David Byun (radiologist MSK/Weil trained - young, brilliant, candid) for his perspective. These two doctors are Exceptionally Supportive and were very clear about my issue and what to expect. I had second opinions provided by Smilow, MSK, and a conversation with Tufts oncology. All opinions were the same as Dr. Wagner. I also listened carefully to Dr. Mark Scholz and watched all of his video presentations/interviews. I found this forum (Mayo) and the insight from many on here was terrific (Jeff Marci and Heavy Phil to name two that have been exceptional!). I opted for SBRT and 120 days of orgovyx and finished the initial treatment in December of '25 and the orgovyx in March of '26. I stayed (and remain) very active throughout - exercise was a big help (hiking, skiing, out with my dogs everyday). Side effects: fatigue, low/no libido, minor discomfort when I pee - all resolved by and large by June. Now: No meaningful side effects except some occasional fatigue. Functioning as close to normal as one could hope. For me: the risk of my remaining life dealing with incontinence or intimacy restrictions from surgery was not going to work. Being alive and living are two different things in my view. There is no wrong decision. The only right decision is the one you are most comfortable making. We are lucky to have prostate cancer and not the issues kids and others have with far more dire forms. Go Easy and Good luck. This works out and you will be fine.

@johnnyz I should have included that my Gleason score was 3+3 last year, and after this biopsy it has shifted to 3+4=7 and intermediate unsatisfactory