Prostate cancer surgery: What can I expect & prepare for?

Posted by justmike74 @justmike74, Nov 19, 2022

48 about to have prostate removal surgery
Just needing some advice or experiences of survivors of this, what to expect and what to prepare for.

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

Get it our any way but is in Apex it can make you incontinent needing another operation

I then went 40 days of radiation instead after robotic attempt was stopped

Get on Zolodex to stop testosterone the fertilizer of PC

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@justmike74 , there can be a LOT of variables but I think my experience is pretty common...I'm 61

Expect to be very sore after the operation for a couple of days, it goes away fairly quickly. You'll wake up with a foley catheter inserted to relieve yourself. It's a pain in the neck but likely only for about 10-days to two weeks, goes by pretty quickly.

I was in the gym in about 3-4 weeks after the cath was removed, just went to the bathroom about every 20-30 minutes for the first few months. It was about 4 or 5 mos if I recall correctly before I could run and control well.

After that the variables are mostly dependent on amount of cancer that has to be removed and surgical skill. Once the cath was removed I was mostly continent with a little leakage when I tried to exert in any way, pass gas with any forceful assistance, sneezed or even blew my nose sometime. In these instances I'm talking about a few drops. I only wore pads for a couple days and more for a "just in case" insurance as opposed to real need. I was religious about doing the kegel exercises set of 10 at least 3 to 4 times a day. Some here swear by physical therapy to prepare for the surgery, if it had been offered to me, I'd have done it. Maybe ask your care team?

Within a 4 week period that was mostly gone, with odd exception, of passing gas by way of pushing. Mostly have to just let it go on it's own, or be standing over a toilet if possible.

The other biggie is ED, that I have had to deal with for the last 14 mos since the surgery, it is getting a little better and I can have a dry orgasm, but I don't get erect/hard enough for penetration most of the time without chemical assistance, although there have been gains in this regard lately. Apparently it takes a LONG time for nerve tissue to heal if it's going to.

In regard to what @melcanada has suggested, the way I describe the relationship to simplify to people is if prostate cancer was an animal, it eats testosterone and poops PSA. (obviously an oversimplification) So if you stop the testosterone production you can starve it. Not sure if it just slows it / makes it dormant or actually kills it, (that's a discussion I'm going to have with my radiation oncologist at the next visit), but, it can definitely slow the disease progression if you're "castrate sensitive". I'm on a drug for this called Orgovyx. It has it's own side effects which I guess are worth it if it's working. It seems a lot of docs don't prescribe this type of treatment to those getting the surgery, mine didn't.

Ultimately I had chemical recurrence and ended up with radiation as well. I got Salvage Radiation Therapy combined with the drug. It was prescribed by my surgeon but the radiation oncologist told me it only provided better outcomes 3%-5% of the time statistically. I'll take it. I think @kujhawk1978 may have provided some studies with slightly better numbers than this. He's posted some great research results you can look up here.

Knowing what I know now, I think I might have gone on it immediately after diagnosis unless a doc could've told me why I shouldn't. I'm thinking it may shrink / hide cancer making the surgeon's job a little more difficult but have never had that discussion. Maybe discuss this as well?

General health now? The only thing I'm dealing with now is the ED, everything else is almost normal except the waiting around for the next shoe to drop. That's an unfortunate psychological side effect of the disease. The best advice given to me is as soon as you are able, get out and enjoy yourself, keep active and try not to dwell on it.

Best of Luck to you !

REPLY
@web265

@justmike74 , there can be a LOT of variables but I think my experience is pretty common...I'm 61

Expect to be very sore after the operation for a couple of days, it goes away fairly quickly. You'll wake up with a foley catheter inserted to relieve yourself. It's a pain in the neck but likely only for about 10-days to two weeks, goes by pretty quickly.

I was in the gym in about 3-4 weeks after the cath was removed, just went to the bathroom about every 20-30 minutes for the first few months. It was about 4 or 5 mos if I recall correctly before I could run and control well.

After that the variables are mostly dependent on amount of cancer that has to be removed and surgical skill. Once the cath was removed I was mostly continent with a little leakage when I tried to exert in any way, pass gas with any forceful assistance, sneezed or even blew my nose sometime. In these instances I'm talking about a few drops. I only wore pads for a couple days and more for a "just in case" insurance as opposed to real need. I was religious about doing the kegel exercises set of 10 at least 3 to 4 times a day. Some here swear by physical therapy to prepare for the surgery, if it had been offered to me, I'd have done it. Maybe ask your care team?

Within a 4 week period that was mostly gone, with odd exception, of passing gas by way of pushing. Mostly have to just let it go on it's own, or be standing over a toilet if possible.

The other biggie is ED, that I have had to deal with for the last 14 mos since the surgery, it is getting a little better and I can have a dry orgasm, but I don't get erect/hard enough for penetration most of the time without chemical assistance, although there have been gains in this regard lately. Apparently it takes a LONG time for nerve tissue to heal if it's going to.

In regard to what @melcanada has suggested, the way I describe the relationship to simplify to people is if prostate cancer was an animal, it eats testosterone and poops PSA. (obviously an oversimplification) So if you stop the testosterone production you can starve it. Not sure if it just slows it / makes it dormant or actually kills it, (that's a discussion I'm going to have with my radiation oncologist at the next visit), but, it can definitely slow the disease progression if you're "castrate sensitive". I'm on a drug for this called Orgovyx. It has it's own side effects which I guess are worth it if it's working. It seems a lot of docs don't prescribe this type of treatment to those getting the surgery, mine didn't.

Ultimately I had chemical recurrence and ended up with radiation as well. I got Salvage Radiation Therapy combined with the drug. It was prescribed by my surgeon but the radiation oncologist told me it only provided better outcomes 3%-5% of the time statistically. I'll take it. I think @kujhawk1978 may have provided some studies with slightly better numbers than this. He's posted some great research results you can look up here.

Knowing what I know now, I think I might have gone on it immediately after diagnosis unless a doc could've told me why I shouldn't. I'm thinking it may shrink / hide cancer making the surgeon's job a little more difficult but have never had that discussion. Maybe discuss this as well?

General health now? The only thing I'm dealing with now is the ED, everything else is almost normal except the waiting around for the next shoe to drop. That's an unfortunate psychological side effect of the disease. The best advice given to me is as soon as you are able, get out and enjoy yourself, keep active and try not to dwell on it.

Best of Luck to you !

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Replying to myself, well that's weird...

Just looked up some ADT info, it only slows cancer it doesn't kill cancer cells.
and..
two different sites listed the fact that ADT before Prostatectomy is not the "standard of care", there wasn't an explanation as to why that is listed.

"The use of hormone therapy (alone or in combination with chemotherapy) before prostatectomy has not been shown to be of benefit and is not a standard treatment. More intensive androgen blockade prior to prostatectomy is being studied in clinical trials. "

https://www.cancer.gov/types/prostate/prostate-hormone-therapy-fact-sheet
REPLY

There are lots of variables. Keep reading the Mayo blog and going online. There is a ton of information out there. I had a RP surgery last January and have recover well, except no erectile function yet. Good luck with your surgery.

REPLY

Get the book (Amazon) by Dr Patrick Walsh, Guide to Surviving Prostate Cancer; read the gray-highlights (like Cliff’s Notes) at the start of each chapter. Then read the chapters pertaining to you and your path so far chosen.

A PSMA test showed my cancer was confined to the gland. I chose RALP as my research indicated that radiation was a viable option after surgery, but not the other way around. After surgery, pathology found in my prostate a previously undetected, higher grade of cancer (Gleason 8+) which would have survived radiation.

Get Pelvic Floor Physical Therapy for 4-6 weeks prior to surgery. For me, this prevented incontinence, a major morale boost for me. I used full diapers for 3-4 weeks and went to the Pads, not Guards, for a few weeks during my post-surgical PT. I experienced only minor dribbling.

Research, read and learn from websites such as Mayo Clinic, John’s Hopkins, M D Anderson and others.

I was 72 when diagnosed in March. My surgeon has stated that all my cancer has been removed.

Return here to ask questions.

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I had a radical prostatecomy on Oct 31, so it is been 3 weeks today. They also removed many lymph nodes. It was all done with the daVinci robot. I have 6 entry and 1 exit sites on my abdomen. I spent two nights in the hospital with bad pain only to discover I developed an Inguinal hernia from the robotic surgery. I would trade cancer for a hernia anytime. 12% of patients develope this hernia so it is not unheard of. I wasn't prepared for the incontinence that follows. It might be beneficial to buy some bed pads for your furniture and floors. Also some depends and some liners for small leaks. Some wipes and extra toilet paper come in handy. Be prepared to save stress. I start my incontinence therapy tomorrow the 22nd. They will check my PSA after Christmas to determine what if any treatment is necessary. I never had 1 symptom... no pain or urination problems... even on the day I walked into the hospital for surgery. It was discovered from routine blood work.

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@jammy

I had a radical prostatecomy on Oct 31, so it is been 3 weeks today. They also removed many lymph nodes. It was all done with the daVinci robot. I have 6 entry and 1 exit sites on my abdomen. I spent two nights in the hospital with bad pain only to discover I developed an Inguinal hernia from the robotic surgery. I would trade cancer for a hernia anytime. 12% of patients develope this hernia so it is not unheard of. I wasn't prepared for the incontinence that follows. It might be beneficial to buy some bed pads for your furniture and floors. Also some depends and some liners for small leaks. Some wipes and extra toilet paper come in handy. Be prepared to save stress. I start my incontinence therapy tomorrow the 22nd. They will check my PSA after Christmas to determine what if any treatment is necessary. I never had 1 symptom... no pain or urination problems... even on the day I walked into the hospital for surgery. It was discovered from routine blood work.

Jump to this post

Welcome @jammy. Great tips for @justmike74, especially since your experience was only 3 weeks ago.

Has the incontinence improved? Are you doing Kegel exercises? @maxvt will be sure to tell about the importance of doing them. 🙂

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I been strengthening my pelvic floor muscle while waiting for therapy. I start today with the floor exercises and hope I respond quickly to the therapy.

REPLY

What the others here are saying about the incontinence brings to mind another thing I did, I had kits in a few places...Both cars, the gym, in the sidebox on the motorcycle etc.. Just to be safe.

A kit was an old pair of jeans, a heavy pad and a pair of underwear, just in case.
Luckily I never needed them but it was a nice piece of mind to have 'em.

Best of Luck!

REPLY
@web265

@justmike74 , there can be a LOT of variables but I think my experience is pretty common...I'm 61

Expect to be very sore after the operation for a couple of days, it goes away fairly quickly. You'll wake up with a foley catheter inserted to relieve yourself. It's a pain in the neck but likely only for about 10-days to two weeks, goes by pretty quickly.

I was in the gym in about 3-4 weeks after the cath was removed, just went to the bathroom about every 20-30 minutes for the first few months. It was about 4 or 5 mos if I recall correctly before I could run and control well.

After that the variables are mostly dependent on amount of cancer that has to be removed and surgical skill. Once the cath was removed I was mostly continent with a little leakage when I tried to exert in any way, pass gas with any forceful assistance, sneezed or even blew my nose sometime. In these instances I'm talking about a few drops. I only wore pads for a couple days and more for a "just in case" insurance as opposed to real need. I was religious about doing the kegel exercises set of 10 at least 3 to 4 times a day. Some here swear by physical therapy to prepare for the surgery, if it had been offered to me, I'd have done it. Maybe ask your care team?

Within a 4 week period that was mostly gone, with odd exception, of passing gas by way of pushing. Mostly have to just let it go on it's own, or be standing over a toilet if possible.

The other biggie is ED, that I have had to deal with for the last 14 mos since the surgery, it is getting a little better and I can have a dry orgasm, but I don't get erect/hard enough for penetration most of the time without chemical assistance, although there have been gains in this regard lately. Apparently it takes a LONG time for nerve tissue to heal if it's going to.

In regard to what @melcanada has suggested, the way I describe the relationship to simplify to people is if prostate cancer was an animal, it eats testosterone and poops PSA. (obviously an oversimplification) So if you stop the testosterone production you can starve it. Not sure if it just slows it / makes it dormant or actually kills it, (that's a discussion I'm going to have with my radiation oncologist at the next visit), but, it can definitely slow the disease progression if you're "castrate sensitive". I'm on a drug for this called Orgovyx. It has it's own side effects which I guess are worth it if it's working. It seems a lot of docs don't prescribe this type of treatment to those getting the surgery, mine didn't.

Ultimately I had chemical recurrence and ended up with radiation as well. I got Salvage Radiation Therapy combined with the drug. It was prescribed by my surgeon but the radiation oncologist told me it only provided better outcomes 3%-5% of the time statistically. I'll take it. I think @kujhawk1978 may have provided some studies with slightly better numbers than this. He's posted some great research results you can look up here.

Knowing what I know now, I think I might have gone on it immediately after diagnosis unless a doc could've told me why I shouldn't. I'm thinking it may shrink / hide cancer making the surgeon's job a little more difficult but have never had that discussion. Maybe discuss this as well?

General health now? The only thing I'm dealing with now is the ED, everything else is almost normal except the waiting around for the next shoe to drop. That's an unfortunate psychological side effect of the disease. The best advice given to me is as soon as you are able, get out and enjoy yourself, keep active and try not to dwell on it.

Best of Luck to you !

Jump to this post

Just to add to the details provided, I had blood in my urine for 3-4 weeks after RALP. Also, my penis and scrotum looked badly bruised but did not hurt. My surgeon said this was all normal and the bruising cleared up in few weeks. I never woke up at night to pee pre-surgery but after surgery I was getting up once or twice a night for the first 5-6 months. I'm 8 months post-surgery and my urinary function is just beginning to feel normal again. I can even drink a beer and not worry about repercussions.

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