Year Of Firsts: Your Experiences

We can only relate our experiences, there are some commonalities but it's really different for everyone.

In my case, I was pretty lucky...I went right back to my normal diet which is fairly healthy and I don’t eat much spicey food anyway, grew up in a gourmet Irish household, you know, boil everything till there’s not much flavor left. LOL

As far as the bladder is concerned, kegels, ,kegels, kegels. I used the “never miss an opportunity to use the bathroom” mantra when out of the house. One of the things I noticed was what seemed like an almost constant urge to pee for the first few weeks. You learn to retrain your bladder over time by holding longer, but, you don’t want to take to much risk at the grocery store!

I would leak slightly with sneezes, coughs, blowing my nose and passing gas. This went on for about 6 mos as I recall. You’ll learn to retrain yourself on those over time, it wasn’t long. With the gas thing, I learned to let it out rather than push it out as we sometimes do.

I wore a pad for safety sake for the first couple weeks as well, it made me feel more confident with going out in public, but, I probably didn’t really need it. Did I mention kegels? There are some videos on the web demonstrating the correct way to do those, I really would suggest seeing a PT who specializes in it, I didn’t but would have if I’d known about it.

Alcohol wise, I don’t think I really thought about it. First time I went out to dinner with my wife was at the maybe 6-8 day mark after cath removal. I had one drink. We went to a bistro about 20 minutes away, I barely made it home. I don’t think that was the alcohol, I think what happens is I’m so tuned in now from a “biofeedback” perspective, everything effects everything else. So having just eaten a big meal there was less room for the bladder, maybe there was gas in my system pressing on it as well. You’ll learn to adjust. Taking things slowly and seeing how you need to adjust sounds like a great idea.

One more item, I’d suggest. After the surgery, try to get back to sexual experiences as soon as practical. My team kind of shied away from that subject, maybe old school docs, maybe because I’m old as hell, it really wasn’t discussed. If your team isn’t “on it” so to speak, I’d say get proactive. Certainly from a learning perspective, so you understand the ramifications of the surgery and the options that you have. This can be a big part of our self image and overall health. Unfortunately, it can be a sort of "Use it or lose it." proposition.

It's been about 3 1/2 years for me since surgery. You get closer to "normal" as time goes by, it just might not be the exact same normal.

Best of luck to you!

Interesting topic. I had NS RARP in late June 2024. Let me take a little literary license on your question. Rather than "firsts", for me there was 2 significant "periods" when I felt like I "turned a major corner". The first was about 3 months. I had been continent immediately after the catheter came out, but I didn't feel confident as I always felt a bit in danger of minor leakage whenever something new happens (like the first time I lifted something heavy and leaked a little). Sometime around 3 to 4 months I went through a transition period and went from unconfident to confident. At this point (7 months) while I acknowledge some things are different, I consider myself fully recovered urination wise and no longer give it much thought. Similarly, my ED recovery has been gradual with a fair amount of angst. Just in the last 2 weeks I've transitioned into a much more peaceful and confident state. I still have a long way to go, but I'm much more confident having sex with my wife and my much more confident that things will continue to improve. Both these transitions were big deals for me. Best wishes on your recovery. BTW, here's a great video on the sexual recovery by a doctor at Sloan Memorial CCOE that I ran across recently that I wish I'd seen earlier:

I'm going to be perfectly honest, watching this video drove me off a cliff then yanked me back up it and drove me off again. While the information is good and to the point, the statistics he laid out seriously messed with my head.

Up until this point, based on my own reading of numerous papers, I figured ED was something I was less concerned with than incontinence. After months of preparation I believe incontinence will be controllable and now ED is on my mind. This video almost goes to great lengths to say "well, you are screwed no matter what". I'm < 60, so I'm in that preferred group but it's a tiny percentage that function without meds, tinier still are those that function naturally after surgery and then there's that bullet of "well if you are lucky enough to get an erection after the catheter is out then it'll go away and you'll build up for 2 years". All of that and it's already heavily presumed by my doctor, based on the MRI, that half my nerves will be lost.

I had a total meltdown after watching this and even considered canceling my surgery (just 4 days away) and figured that I'd rather have quality of life over no quality and instead quantity of life. It's not just me, my wife also suffers this agony.

This is a good and informative video, but it hit me hard enough that I've not been able to eat all day and am hanging on by a thread. Reality is brutal, but Jesus, that's too much reality for me to deal with. I've been hanging on by a thread already.

I'm hopeful, but not nearly as much as before this video. I went from 25% hope that I would be "one of those guys" to 1%.

I'm so sorry. That wasn't my intent at all. I thought the information was the most thorough I'm found so far and would be of use to you. In particular, I found his information on the recovery time required after surgery to be particularly hopeful to me as he explains why it takes 18-24 months for so many guys to recover, which for me was actually a positive. Again, I'm sorry it upset you. Best wishes.

I’ve seen Dr Mulhall in person several times since I had SBRT and while on ADT. He was the most honest doctor I’ve dealt with and the only one who didn’t give the false hope so many of the other doctors gave me re sexual recovery. He was, for example, the only doctor to tell me 25% of men on ADT never recover their testosterone when they stop and most never go back to baseline. This scared the sh*t out of me and I expected the worst. But, three months after stopping Orgovyx, I’m almost back to low normal testosterone and am functional enough for masturbation with 20 mg of Viagra and for sex with 100 mg.

Dr Mulhall WILL get you functioning sexually in some fashion if you follow what he tells you to do even though, early on, it’s more work than fun.

I’ll probably be on Viagra forever and the dry orgasms bother me WAY more than I expected they would. Most times I deal with it OK by talking it out with a therapist or enjoying sex for what it still is and not what it was, though it did crush me when a partner thought I was “faking it” because there was no “evidence.” That infuriated me and I took a triple dose of Ativan just to shut my brain off for awhile. I know that wasn’t the most mature way to react but that was a setback for me not a regular occurrence.

I also stopped watching p*rn because instead of helping me it just made me see all the stuff I can’t do anymore and left me feeling sad and empty.

If I stay involved in hobbies and especially my volunteer work my life, though diminished, is still mostly worthwhile.

Good luck to you. It sounds like you’ve chosen the surgery path and I hope it works out well for you. Give yourself some grace and kindness. You’re going to go through all the stages of grief: anger, denial, depression, bargaining and acceptance not necessarily in that order and some more than once but, like any grief, it gradually diminishes but never fully disappears.

Hey bud, I was 64 when I had my RP. My wife and I had an active, robust sex life and all the articles and videos said that if you have a healthy sex life B4 surgery you should be OK afterwards…BULL****!
I too, knew that one nerve bundle was a goner and I told my surgeon to “get the cancer, don’t worry about my erections”….I was THAT scared of the cancer.
But In the back of my mind I smugly believed that I would be able to function no matter what; that I would find a way. Unfortunately it didn’t happen, but I was continent and I would take THAT over sex every single time. I tried different pills but nothing worked; was about to use Trimix injections when the cancer came back. It is amazing how quickly your priorities can change!!
I was quickly reminded of what I had told the surgeon: get the cancer, don’t worry about my sex life.
Because this cancer is serious shit and it can KILL you.
I wish you the best on your procedure and hope that luck is on your side; my results do not reflect what yours might be. But keep your eye on the ball, OK? GET THE CANCER and worry about the minor details later; sex is a wonderful thing but living is even better…

I'm not afraid of the surgery nor of the cancer, but at 54 my quality of life is heavily on my mind. I watched my mother die from breast cancer with the last several years in a bed whacked out of her mind on drugs with zero quality of life.

I'm not illogical, I've always known all of the side effects were possible, I also know that 99% of the guys on here are on here because things didn't work in their favor (or they are gathering info) - the guys what got through it have little reason to be here. I know that, at one point, everything that can be in your favor was in mine: saving both nerve bundles, being young, being healthy, never having ED issues, significant preparation for this - the only real change was the news that I would lose half my nerve bundles. I also know I'm worrying before there is anything to worry about and I know how silly and unproductive that is. Stinkin' thinkin'.

I think I'm just at a place where I still have a few days to just pull the plug on this so it's still a choice of quality of life vs quantity of life.

In the 11th hour I just get bombarded with "well, you'll always have some kind of incontinence, be it occasional or constant" and "you'll never really have any chance of a sex life" and one has to ask if trading in the quality of life versus a few more years of normal life is worth it.

I don't know, I've been through a lot of stuff and consider myself a pretty solid person but this has been pretty tough, and I'm sure it's because it's looming after the weekend.

Without knowing any of your specifics, (Gleason score, PSA, options for treatment that you’ve discussed with urologist/ oncologist) it’s hard to suggest anything to give you some peace and confidence in your choice.
I can tell you that I was diagnosed 14 years ago and am just now scheduled to have surgery in March. Fortunately, I was diagnosed early with Gleason 6 and have been diligent about PSA bloodwork every 3-6 months. Perhaps some additional opinions from PC professionals will help to reassure you on the treatment that’s right for you. Good luck!

Hey, I went back to your original post in Dec of ‘24. You were a Gleason 7 with a higher .68? Decipher score. Many posts/suggestions have been offered in the meantime and here we are with you scheduled for surgery, but every fiber in your being is telling you NOT to have it.
So what were the reason(s) for choosing surgery over SBRT (Cyberknife/ MRI Meridian), IMRT with ADT or TulsaPro? The side effects with those are much more limited and less severe than with surgery (IMO!). And the long term outcomes exactly the same.
So why are you doing surgery ? - your age and “chance” of recurrence is the only thing that justifies it in my mind. Just askin’…

I did inquire into those, no doctor (and I spoke to a few of them) felt those were better alternatives than surgery. Also, with surgery, the entire prostate can be removed and biopsied to see how serious it really is - and removal is the only effective way to know that for certain. With the Decipher score they feel confident that it is worse. Additionally, the MRI shows it has a bulge, which indicates the possibility of either it has left the prostate or it will. These factors make removal a good option, still leaving the door open for additional treatment options later.

The bulge is certainly a concern. That bulge has already caused the doctor to be relatively sure (not certain until he's in there) that I'll lose half my nerves. Well, I'd rather have half than none and who is to say that waiting won't cause me to sacrifice the other half?

I have to go with what doctors tell me. I'm not a doctor, nor is anyone here. My doctors aren't quacks, all of them were from cancer centers of excellence with significant PC history under their belts.

Believe me, I've had a lot of anxiety in spurts, and it's so easy to ask if I made the right decision or if I should have traveled elsewhere for newer treatments, but I have to trust my doctors. I've considered not doing anything at all and just letting it runs it's course, but realize that is foolish because I don't know what's on the other end of this - I might be fine or I might be screwed, nobody knows.