What is a Prostatectomy Like?

I am exactly two years out from my RALP and do not regret my choices, though sometimes I have doubts I took the correct course. I have several friends who took the radiation route, and all but one had a recurrence of the cancer within ten years. Choosing surgery was based on the advice of every opinion I sought, including the radiation specialist, because I caught the cancer so early, and it was not the slow growth kind. My PSA has since been negligible at every interval that it is checked. Yay. I am alive and prostate cancer seems to be gone. The prostatectomy was followed a year later by a robotic inguinal hernia repair. Coincidental timing? I think not, as many here have agreed, but the repair was successful. At my 18-month PSA checkup, I asked my urologist/surgeon two questions: 1) When will I be 100% continent? He asked how many pads I use and I told him never more than one a day, but I still leak when exercising. "How much leakage?" Just a few ounces but it still required pads when golfing, hiking or playing pickleball. He told me one pad a day fits the definition of "continent" in the eyes of the industry. Question 2) When will I get erections again, since he said the original surgery was nerve sparing. "You are likely as healed as you will ever be", meaning no more natural erections. I fell into the minority group of patient results it would seem, but reading comments on other sites like FrankTalk and NAFC.org makes it seem like there's a lot more men like me out there than the data would imply. In two weeks I am scheduled to get the male urinary sling, but the surgeon has told me flat out the improvement won't be dramatic because I leak so little now. But I am pursuing it because I want to live with as little leakage as possible. I will not tell anyone what choice to make but your life will change because of this cancer. You will come across people who pooh-pooh it saying, "Oh it's only Prostate cancer, they can cure that". And you'll have to nod and smile when you really want to yell back that kidneys never stop producing urine and urine never stops flowing out the body if it doesn't have traffic stops. And you just had your traffic stops cut out of your body. And remember that concept of "self" so big in today's culture? Males grow up thinking an erection is proof they are a masculine being. And now that is gone too. Life is full of changes, and we have to adapt.

The simple answer is, “there is nothing like it.” Unique to men and unique to each man. You go in with no symptoms, trusting more than one test and expert’s word you have C, and come out in pain and leaking. Four days out, back to doc to re-secure catheter to my leg so it stopped pulling in and out. In my case, for additional fun, after one week when they pulled out the catheter, for first time ever in my life, an allergic reaction, to who knows what, a rash and swollen head, neck, upper back all the way down into my hands. Trip to urgent care, steroids and Benadryl, finally knocking it down. Now, three weeks post-op, I have no idea whether the pecker is dead or just diminished. And there is no 100% guarantee. Pathology – Grade Grp 5, Cat pT3a, IDC – Present, EPE – Present non-focal, VI and PI – Present. At least C is not in removed right side lymph nodes and nerve bundle. PSA in 3 months. Nothing will be normal again………Doc Holliday on death bed to Wyatt Erp in “Tombstone,” “There is no normal life, Wyatt. Only life. Go out and live it.” No more practical advice than that…ever.

At 69 I was officiating high school lacrosse in 4 months and quit pads after 5 months. I still get a drip but wear sport type underwear, so it evaporates and doesn't smell and literally a drop every now and then. Sitting on something hard or that has a sharp edge causes my bladder neck to bend like a whip cream can nozzle, so I am careful about where and how I sit. We have to learn the "new me" and get living. Wearing black shorts and pants is helpful too as they don't show the wet spot if you do leak. I'm the only guy during the game that is standing in the middle of the field that knows I just "pissed myself" and just smile as life is good while chasing my passion.

After surgery, it was 3 1/2 years before it came back, Had seven weeks of radiation 2 1/2 years later it came back. At that point, I was put Lupron Which kept me undetectable for another three years.

Now you really have me concerned with your being just under surveillance. With your case history that is a death watch. I just can’t think of any people that had long cancer free days after a 3rd reoccurrence without treatment..

You need to find yourself a different set of doctors, Time to hit a center of excellence. You should probably be on ADT or your cancer is going to come back viciously. It has come back three times. Do they really expect it to not continue to grow after coming back a third time.. If you don’t get put on something after your recurrence following Salvage radiation it is almost malpractice. I’ve heard from people whose urologist did this to them and they just got worse, metastasis don’t wait to attack, they love untreated Prostate cancer patients.

I was one of the fortunate ones who was continent within “milliseconds”. Best of luck.

Although today is still the Chinese Spring Festival, belongs to the festive time, but tonight I saw "What is Prostatectomy?" After that, I cried! The patient's words "This is hell on earth" deeply hurt my heart! I have written this several times and tears have filled my eyes and interrupted the typing on the keyboard! When I underwent surgery for radical prostate cancer on January 7, 2023, I recalled the pain of lying in bed, flipping over for 20 minutes. The most memorable is that on the night of the 21st, I dreamed that my mother, who has been dead for 35 years, came to visit me in the hospital, and I heard my mother calling me from far away: "Son, how can you be so?" To see you so ill, as if you were cutting my flesh, my bones, my heart..." I saw my mother come to my bed and call out, "Mom, mom, mom! . We held each other and cried... The crying alarmed the nurse, who immediately came to the ward to calm me. I woke up with tears on my pillow.
For more than two years, even though I've been doing Kegel exercises, pelvic floor muscle exercises, I still have over 70% incontinence. Read: surveyr @survey, @fwintracy, @briang1958, @peterj116, @firespooks several gentlemen's posts, very touched! The situation with @firespooks in particular has been very moving and inspiring for me, and I will definitely continue to exercise to recover the urination ban.

I had a lot of pain after my surgery. They gave me pain pills which helped with the pain. Unfortunately I had no idea that the pain pills would make me severely constipated . And THAT pain was worse than the surgery. I finally got that straightened out. I am incontinent to this day 19 years latter. I had a recurrence of cancer 7 years later. Then 39 salvage radiation treatments. I was cancer free for 2 year and now it is back again growing slowly. I am mow just under surveillance.

That's a valid vent.
But because we're not robots, it's different for everyone.
Some are continent within milliseconds. People like you & I are still leaking months afterwards.

The catheter was no fun - neither is incontinence.
But you know what else is not fun? Being dead.
I've always said that I feel lucky it's prostate cancer.
Why? Because if it was bladder cancer or lung cancer or something, I couldn't just say "Meh... take it out".
But with prostate cancer, we can.
It's still worse than not having cancer at all, but we're better off than some.

In terms of incontinence, ED etc.... it's just part of it. The main thing is getting rid of the cancer.
I know just was well as anyone else here what massive pain it is to leak constantly.
But there's a lot of support & ways to deal with it.
We just have to get through this, one challenge at a time.
The alternative is to do nothing. That option rarely ends well.

I'm with you brother.
Cancer has given me the "Life sucks and then you die" attitude.
Absolutely nothing good about it, then the question is.
Do you want to live? Spouse, Partner, Kids, Grandkids, Friends.
Do you want to live?
I am 12 years after diagnosis, on my 3rd recurrence, having SBRT on Friday at Mayo.
Keep fighting!!!!

I’m so very sorry to hear of your “living hell” post-op, surveyr. Like jeffmarc I thankfully had a different post-op experience. As has been said often on this site, our paths are so varied - both in symptoms, treatment, and results.

We often don’t get to choose our path but we do choose our response to that path. Keep the faith, friend. You can still impact the resultant path you follow in recovery. Work hard by following the surgeon/doc’s suggestions and then work some more. Don’t give up!