Post Op Recommendations

I looked into the other options, I talked to five doctors about the alternative treatments and asked each one: would you do it for yourself or a loved one and the answer was no in every instance. I think part of this is driven by my age and their thinking I would recover from the RALP while the other procedures were either still quite experimental or less effective or better suited for older patients.

Everyone's mileage varies and I can use this massive network of doctors at my fingertips and hope their advice is the best or I can do the same with the Internet. In the end I have to get this done and recommended quite soon, so spending months exploring options isn't a path I can take. The main reason I'm going RALP is that I have several fallback plans if the cancer returns, those fallbacks become fewer with other options.

I did similar asking, you know doctors trained in traditional surgery and have never seen, read, or studied a close option are not going to recommend it since it is just another unknown and in past some not great options were out there. But contrary to what you mention, if you see a doctor you are still there patient for two years - in general this is true nationwide. So you don't lose any doctor going with another treatment. Also Tulsa leaves ALL other option open for recurrences, it does NOT close them, I looked and talked to doctors on that and it is completely true. It also opens some options in some cases.

Good luck on your procedure hope it works out for you.

Actually I intentionally did not restrict my discussions to surgeons, and even the radiation oncologist also said the same thing, despite having read multiple times on forums that "surgeons only recommend surgery, oncologists only recommend radiation". But, I also did my own research on the matter and have read some very large studies which confirmed their concerns. I'm glad it worked for you and I'm sure it's worked for other men as well, but it's a little too experimental for me unless my last medical oncologist (who has no pony in the race) from MD Anderson tells me to reconsider.

To everyone else with suggestions, my heartfelt THANK YOU for your suggestions, they were very helpful.

I'm able to bury this thing in the back of my head 90% of the time, but every once in a while, like right now at midnight on a Monday, it's really freaking me out again.

I told my wife that I'm not at all afraid of the cancer nor the surgery - both things I have experienced before, I'm terrified of waking up from surgery and starting a radically different life than I anticipated. I can hope that I'm in the small number of men that experience no incontinence (and I'm working my butt off right now to try to ensure that) and the small number of men that experience no ED or only minor ED, but I cannot focus on that or I'm going to be ultra depressed if either of those scenarios turns out to be untrue - so I focus on a life in diapers with a dead fish in my trousers.

The catheter is only one aspect of my fears, but certainly it's more of just knowing I have to deal with something highly uncomfortable for a week, but then it comes out (which has never been a pleasant experience) and I start living this new life. My pants are firmly 100 feet behind me because I scared them off 😉.

There are some really great tips here and thank you all for them. I have two months more to prepare, I should go in 20lbs lighter with pelvic floor muscles that can squeeze carbon steel into micrometer measured wire! I'm even planning my food intake for the first couple of days to be lighter on solids just so I can adjust to things a bit before I bring having to spend time on a toilet into the picture - particularly given the delicate nature of the internal surgery that still has to heal in that area.

"...I'm working my butt off right now..."

This is the right attitude. There are proven pathways to maximize your chances of good return of continence and erectile function. Committing to those rehab plans with the laser focus of a footballer to make the NFL as an undrafted walk-on will at a minimum help you avoid wallowing in worries about what your future life will be like. There is much advice in this forum on both these fronts.

There is no current set of standard guidelines for penile rehabilitation post nerve-sparing RALP. Personally, I found the following to be effective for turning my "dead fish" back into a firm and playful dolphin. Starting within two weeks of the surgery, daily PED-5 inhibitor (eg viagra @ 50-100mg), stimulation to orgasm 2x/week with a sex toy designed for a flaccid penis (eg Octopussy), use of a vacumn erectile device 5x/week for 2-3x 3-5 minutes (eg Vacurrect), and patient playful experimentation with my wife. At age 74, that got us back into our previous sex life within 7-8 months. I regarded it the same as re-habbing from a significant injury, like an Achilles tear, which can take up to a year.

I'm still not sure of the penis pump thing. I can't stop thinking about Austin Powers. 7 weeks post-op & I'm too busy peeing myself to worry about penile rehabilitation right now.

I'm sorry that you are still suffering from that and I hope it clears soon.

To me the ED/Incontinence thing is akin to that old story most of us know about the 95 year old man who smokes a half a pack a day and eats bacon sandwiches daily and is perfect health for 95 (aka Grumpy Old Men): some guys have reported erections on day 1 with the catheter (and painful too) and others report the day after the catheter they had either no issues at all or one minor issue and then all clear. This is what we wall hope for but my docs told me to expect a minimum of 6 weeks to 6 months of incontinence at least, perhaps longer, and up to two years before the erection is of any consequence.

I've also read some horror stories of not exercising that erection regularly and losing 1-3" of length and girth and shortening of the un-stretched urethra being problematic.

This is to say that if I'm still peeing myself I'm going to work in stimulation between those times as much as I can. I realize life changes, but if there is a single thing I can do at any point to assist with reversing those changes then I'm going to do it, no matter how messy or uncomfortable it is (until the point of pain of course).

To everyone else with suggestions, my heartfelt THANK YOU for your suggestions, they were very helpful.

I'm able to bury this thing in the back of my head 90% of the time, but every once in a while, like right now at midnight on a Monday, it's really freaking me out again.

I told my wife that I'm not at all afraid of the cancer nor the surgery - both things I have experienced before, I'm terrified of waking up from surgery and starting a radically different life than I anticipated. I can hope that I'm in the small number of men that experience no incontinence (and I'm working my butt off right now to try to ensure that) and the small number of men that experience no ED or only minor ED, but I cannot focus on that or I'm going to be ultra depressed if either of those scenarios turns out to be untrue - so I focus on a life in diapers with a dead fish in my trousers.

The catheter is only one aspect of my fears, but certainly it's more of just knowing I have to deal with something highly uncomfortable for a week, but then it comes out (which has never been a pleasant experience) and I start living this new life. My pants are firmly 100 feet behind me because I scared them off 😉.

There are some really great tips here and thank you all for them. I have two months more to prepare, I should go in 20lbs lighter with pelvic floor muscles that can squeeze carbon steel into micrometer measured wire! I'm even planning my food intake for the first couple of days to be lighter on solids just so I can adjust to things a bit before I bring having to spend time on a toilet into the picture - particularly given the delicate nature of the internal surgery that still has to heal in that area.

To everyone else with suggestions, my heartfelt THANK YOU for your suggestions, they were very helpful.

I'm able to bury this thing in the back of my head 90% of the time, but every once in a while, like right now at midnight on a Monday, it's really freaking me out again.

I told my wife that I'm not at all afraid of the cancer nor the surgery - both things I have experienced before, I'm terrified of waking up from surgery and starting a radically different life than I anticipated. I can hope that I'm in the small number of men that experience no incontinence (and I'm working my butt off right now to try to ensure that) and the small number of men that experience no ED or only minor ED, but I cannot focus on that or I'm going to be ultra depressed if either of those scenarios turns out to be untrue - so I focus on a life in diapers with a dead fish in my trousers.

The catheter is only one aspect of my fears, but certainly it's more of just knowing I have to deal with something highly uncomfortable for a week, but then it comes out (which has never been a pleasant experience) and I start living this new life. My pants are firmly 100 feet behind me because I scared them off 😉.

There are some really great tips here and thank you all for them. I have two months more to prepare, I should go in 20lbs lighter with pelvic floor muscles that can squeeze carbon steel into micrometer measured wire! I'm even planning my food intake for the first couple of days to be lighter on solids just so I can adjust to things a bit before I bring having to spend time on a toilet into the picture - particularly given the delicate nature of the internal surgery that still has to heal in that area.