What is a Prostatectomy Like?

Posted by surveyr @surveyr, Jan 29 8:31am

It is living hell
You wear a catheter for 7-10 days after surgery,
Then the fun begins.
You are now incontinent, and you must wear diapers, you actually leak pee,
It at times squirts out of you. You have constant urge to go meaning trips to bathroom every hour or less.
You have to deal with constant leaking, ED, potential UTIs.
Embarrassing and
Humiliating absolutely terrible time.
The care team will tell you that the
Incontinence last 9 months or more.
Remember prostrate cancer is slow growing
Surgeons will encourage surgery and your cancer will be gone but your life has changed forever because the incontinence is a daily challenge. Assuming you regain continence then you have to deal with ED.
Research as much as you can before making the decision to have prostatectomy. It is your body and your life afterwards.
But you potentially traded quality for quantity of life.

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

heavyphil | @heavyphil | 4 days ago

In reply to @heavyphil "I’ve seen that guy on TV! He does commercials for automobile car mats and Medicare Advantage..." + (show)

Not to nit pick, but we really can’t SEE him turning his pecker on and off like a spigot, we just hear him narrating. But I did this TOO and it didn’t matter a few hours later…

peterj116 | @peterj116 | 4 days ago

In reply to @heavyphil "I’ve seen that guy on TV! He does commercials for automobile car mats and Medicare Advantage..." + (show)

Oh, does he? lol

luck1 | @luck1 | 4 days ago

In reply to @survivor5280 "I had the same experience as the guy in the said video. Cath out, not an..." + (show)

Where did you have the surgery done?

survivor5280 | @survivor5280 | 4 days ago

In reply to @luck1 "Where did you have the surgery done?" + (show)

UCHealth, Highlands Ranch, Colorado.

edinmaryland | @edinmaryland | 3 days ago

So, is the video a fraud??

survivor5280 | @survivor5280 | 3 days ago

In reply to @edinmaryland "So, is the video a fraud??" + (show)

I think Phil was being cheeky because it's the unicorn ending that so many guys on here didn't have.

edinmaryland | @edinmaryland | 3 days ago

OK
I wish urologists would tell patients that there are many options to treat prostrate cancer and the odds keep getting better. learn, explore, get third and fourth opinions. I like my urologist and he did not 'sell me' anything

However, if you elect for robotic prostratectomy, expect good results (with no guarantees and lots of exceptions), but also expect:
ED and incontinence.

Most of the NIH studies point to an overwhelming majority of men being incontinent for many months (80% +)
I can't believe some are 'advertising' like used car salesmen that their odds are lower, that a majority of their patients do not have incontinence or ED, That they will remove the catheter in a day or so. That manyof their patients are back to work in a week. This goes against good practice and the established research.
I would still elect for robotic prostratectomy, I believe the right choice for me. but this was far from a walk in the park. I love adding more life expectancy and this trumps everything., but returning to work in a week or so seems totally unrealistic unless you have a job in which you can work while being incontinent. Shame on those urologists who just do not put this out there and up front. .

survivor5280 | @survivor5280 | 3 days ago

In reply to @edinmaryland "OK I wish urologists would tell patients that there are many options to treat prostrate cancer..." + (show)

My urologist was 100% upfront with me about the side effects and recovery. He also talked about other treatment options. In fact, he all but guaranteed some measure of ED at the minimum and certain incontinence. I didn't get a dog and pony show from him - but I didn't get one the first time I used him either and I trusted him enough to have him do this.

I know a lot of folks are down on their doctors for their outcome. My outcome was positive, but I was told up front that it would be negative. He told me that, based on the MRI, I would lose at least half my nerve bundles, if not more. I lost a couple nerve endings and kept most of the nerves on one side and all on the other.

Just before I went in for surgery someone here posted a Sloan doctor's presentation that depressed the living hell out of me. The guy backed up what my doctor said about the vast majority of men experiencing ED and/or incontinence. But there was one take-away from that video that stuck with me, he said that if your sexual function is important to you that it doesn't hurt to remind your surgeon of that right before surgery so that when he's in there he's thinking about it and maybe take a few extra minutes to examine the nerves a little more thoroughly before just cutting them out. I did that very thing, and I even told my wife that if I forgot to say it that I wanted her to remind him. I don't know if that made any difference, but I didn't lose half my nerves due to the protrusion on my prostate.

The point being that not all experiences are the same. I saw 9 different doctors before making my decision, not a single one of them recommended their specialty, they all recommended surgery, every one. Now I'm only 54 and that was a huge factor because they all prefaced with "at your age", but my experience wasn't "surgeons want to cut and oncologists want to radiate".

I think whoever told you that it was a walk in the park and you'd be back to work right away was irresponsible for saying those things.

thematrix | @thematrix | 3 days ago

The guy in that youtube video went through the surgery last year and documented his journey. He teaches martial arts in the UK somewhere. There are quite a few that have posted videos of their journey. I think it is really brave of them to do that so others could get an idea of what to expect.