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.

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@hammer101

I am 56 years old and had a radical prostatectomy and lymphadenectomy on November 3, 2022. The surgery went very well and I spent one night in the hospital. The Mayo clinic staff were incredible, with my only complaint being Pathology timeliness (still waiting on final pathology report). I had four incisions from the robotic surgery and one 2" incision for prostate removal. For me, the catheter was the most uncomfortable part of the recovery. My wife used a rotation of Ibuprofen ( three 200 mg) and Acetaminophen (two 500 mg) to control my pain, versus the Oxycodone. I was told the Oxycodone can cause constipation - Definitely would not want this while having the catheter inserted.
After getting the catheter removed, I have had stress incontinence (laughing, coughing, etc.) and periodic leakage. I try to wait until I feel like I need to empty my bladder (max 2 hours) before peeing, but there is increased leakage as time goes along. I find wearing an adult diaper is the most convenient method for dealing with the leakage. At night, I agree with an earlier post, the 3'x3' pads are awesome - They give me peace of mind and twice prevented a mess. Doctor has me doing two sets of Kegels (10 fast reps, 10 slow on/hold 3 seconds/slow off) three times a day. I have been doing these consistently, but don't feel any improvement at this point. Curious, given that I am 19 days post surgery, does anyone know if this is slow progress or somewhat average?
For those that have received their pathology report, does anyone have a situation where they had chemical reoccurrence of PC, even though they had a negative margin within the prostate? Based on biopsy, I have a Gleason score of 4/3. Based on research I have done, thinking reoccurrence post radical prostatectomy is very low when Gleason score is 6 (3/3) or less.
It has been great to read all the comments. Thanks so much and praying that all goes well for everyone.

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I am also 56 years old and was diagnosed in the first week of September with an initial PSA of 32. I was never encouraged to get tested, but decided to after a period of time with decreased urine flow. My Gleason's were 9's & 10's, so the Dr. very much expected metastatis (even if he didn't so much as say it out loud). Fortunately, everything was localized. After surgery, it was revealed that roughly 80% of my gland had been transformed to a yellowish tumorous material and that the cancer was tying to migrate. I had robotic prostatectomy on Nov. 9 and I am approaching my 4-week point. Most likely due to the nature of deterioration of the gland and the need to remove all the marginal activity (10 years ago I would've been stage 4). my recovery has been pretty rough. I still can't sit up. I leak when I get off the couch or out of bed. I've also had incredible pain in the unit (just typing it in makes the scro recoil). Dr. has been a wizard and has finally gotten some of the spasms to subside (or at lease decrease in pain intensity (valium and myrbetriq - I refused to take the NORCO - see other comments here about constipation). I take multiple sitz baths every day to alleviate some of the perineal pressure (still jumps to a 8-9 on the pain scale every evening). Needless to say, my experience has been rough. My path report started off with the caveat, "this is a difficult case." I will be meeting up with my wizard (doctor) in the next few weeks to schedule initial radiation. Get used to being wet with a tough case, but follow the rehab recommendations from the Dr. Do the Kegels and be sure to do them correctly. I got frustrated and went whole hog and probably cost my self more pain than gain. After watching a tutorial from an English woman on youtube, I've learned to start slow and work on making progress. Be diligent and be strong and don't hesitate to let it out when it becomes unbearable. If you can do the sttoic approach like my father-in-law did, then more power to you. that was therapeutic. thanks.

REPLY
@boogs28

I am also 56 years old and was diagnosed in the first week of September with an initial PSA of 32. I was never encouraged to get tested, but decided to after a period of time with decreased urine flow. My Gleason's were 9's & 10's, so the Dr. very much expected metastatis (even if he didn't so much as say it out loud). Fortunately, everything was localized. After surgery, it was revealed that roughly 80% of my gland had been transformed to a yellowish tumorous material and that the cancer was tying to migrate. I had robotic prostatectomy on Nov. 9 and I am approaching my 4-week point. Most likely due to the nature of deterioration of the gland and the need to remove all the marginal activity (10 years ago I would've been stage 4). my recovery has been pretty rough. I still can't sit up. I leak when I get off the couch or out of bed. I've also had incredible pain in the unit (just typing it in makes the scro recoil). Dr. has been a wizard and has finally gotten some of the spasms to subside (or at lease decrease in pain intensity (valium and myrbetriq - I refused to take the NORCO - see other comments here about constipation). I take multiple sitz baths every day to alleviate some of the perineal pressure (still jumps to a 8-9 on the pain scale every evening). Needless to say, my experience has been rough. My path report started off with the caveat, "this is a difficult case." I will be meeting up with my wizard (doctor) in the next few weeks to schedule initial radiation. Get used to being wet with a tough case, but follow the rehab recommendations from the Dr. Do the Kegels and be sure to do them correctly. I got frustrated and went whole hog and probably cost my self more pain than gain. After watching a tutorial from an English woman on youtube, I've learned to start slow and work on making progress. Be diligent and be strong and don't hesitate to let it out when it becomes unbearable. If you can do the sttoic approach like my father-in-law did, then more power to you. that was therapeutic. thanks.

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Oh my, thanks goodness you decided to have your PSA checked and it is an absolute miracle that your prostate cancer is localized. So glad that you did your radical prostatectomy at Mayo - From my investigations of prostate cancer and RP, the doctor's ability directly correlates with surgery success. Sounds like your margins were positive, requiring the doctor to take additional material surrounding the prostate gland.
Sounds like you are doing great, especially given how advanced your prostate cancer was at the time of surgery. Good luck with your recovery and and hope all goes well with the radiation treatments!!

REPLY
@boogs28

I am also 56 years old and was diagnosed in the first week of September with an initial PSA of 32. I was never encouraged to get tested, but decided to after a period of time with decreased urine flow. My Gleason's were 9's & 10's, so the Dr. very much expected metastatis (even if he didn't so much as say it out loud). Fortunately, everything was localized. After surgery, it was revealed that roughly 80% of my gland had been transformed to a yellowish tumorous material and that the cancer was tying to migrate. I had robotic prostatectomy on Nov. 9 and I am approaching my 4-week point. Most likely due to the nature of deterioration of the gland and the need to remove all the marginal activity (10 years ago I would've been stage 4). my recovery has been pretty rough. I still can't sit up. I leak when I get off the couch or out of bed. I've also had incredible pain in the unit (just typing it in makes the scro recoil). Dr. has been a wizard and has finally gotten some of the spasms to subside (or at lease decrease in pain intensity (valium and myrbetriq - I refused to take the NORCO - see other comments here about constipation). I take multiple sitz baths every day to alleviate some of the perineal pressure (still jumps to a 8-9 on the pain scale every evening). Needless to say, my experience has been rough. My path report started off with the caveat, "this is a difficult case." I will be meeting up with my wizard (doctor) in the next few weeks to schedule initial radiation. Get used to being wet with a tough case, but follow the rehab recommendations from the Dr. Do the Kegels and be sure to do them correctly. I got frustrated and went whole hog and probably cost my self more pain than gain. After watching a tutorial from an English woman on youtube, I've learned to start slow and work on making progress. Be diligent and be strong and don't hesitate to let it out when it becomes unbearable. If you can do the sttoic approach like my father-in-law did, then more power to you. that was therapeutic. thanks.

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Ask about getting on Zolodex Its important to stop testosterone the fertilizer of pc

REPLY
@boogs28

I am also 56 years old and was diagnosed in the first week of September with an initial PSA of 32. I was never encouraged to get tested, but decided to after a period of time with decreased urine flow. My Gleason's were 9's & 10's, so the Dr. very much expected metastatis (even if he didn't so much as say it out loud). Fortunately, everything was localized. After surgery, it was revealed that roughly 80% of my gland had been transformed to a yellowish tumorous material and that the cancer was tying to migrate. I had robotic prostatectomy on Nov. 9 and I am approaching my 4-week point. Most likely due to the nature of deterioration of the gland and the need to remove all the marginal activity (10 years ago I would've been stage 4). my recovery has been pretty rough. I still can't sit up. I leak when I get off the couch or out of bed. I've also had incredible pain in the unit (just typing it in makes the scro recoil). Dr. has been a wizard and has finally gotten some of the spasms to subside (or at lease decrease in pain intensity (valium and myrbetriq - I refused to take the NORCO - see other comments here about constipation). I take multiple sitz baths every day to alleviate some of the perineal pressure (still jumps to a 8-9 on the pain scale every evening). Needless to say, my experience has been rough. My path report started off with the caveat, "this is a difficult case." I will be meeting up with my wizard (doctor) in the next few weeks to schedule initial radiation. Get used to being wet with a tough case, but follow the rehab recommendations from the Dr. Do the Kegels and be sure to do them correctly. I got frustrated and went whole hog and probably cost my self more pain than gain. After watching a tutorial from an English woman on youtube, I've learned to start slow and work on making progress. Be diligent and be strong and don't hesitate to let it out when it becomes unbearable. If you can do the sttoic approach like my father-in-law did, then more power to you. that was therapeutic. thanks.

Jump to this post

With regards to your Kegels. Ask your Dr. to write a prescription for urinary physical therapy. They will hook up a tester to you to verify you are doing kegels correctly. I was lost also on how to do them before going into PT. Good luck with everything.

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@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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I stumbled across this site recently. I had prostate cancer in 2008 and was an active participant on a number of bulletin boards,, looking for my solution. One of the things that struck me then was the lack of posts from >>> afterwards, whatever that turned out to be. It would have been nice to hear from someone well after the fact.

I had originally decided against a prostatectomy because of the difficult nature of the operation and questionable outcome (remember,, this was 2008). After several months of research,, and a month traveling around the country looking at the options, I wound up back in Boise, Idaho.

My wife's doctor suggested I take a look at Dr X, an ex boyfriend with s supposedly "terrible bedside manner". What did I have to lose at that point? I had pretty much decided on brachytherapy but knew from my research that the erectile nerves would be dead in two years.

Anyway,, Dr X did indeed turn out to be a character, brusque and a bit intimidating. St Alphonsus had just acquired the "new" Da Vinci robot,, and Dr X had moved from Portland to Boise to take advantage of the new market. He had done over 200 of the surgeries, and seemed overly confident.

I expressed by biggest fear, loss of sexual ability. He insisted that it wouldn't happen under his watch. It was supposed to be one night in the hospital,, it turned out to be two due the fact I had been a little too thorough with the GoLytely and they couldn't hear any bowel sounds.

I had no pain,, and in fact,, still have some of the Norco I was prescribed. A week after the surgery Dr X removed the catheter and I was continent the following day. It was a disappointment as I had bought this huge package of pads, based on what I had read on the boards!

Dr X had told me earlier that he wanted me to take a low does of Viagra, approximately 25Mg, daily to facilitate blood flow to the area. I managed to get a load of 100 mg tablets of sildenafil citrate from a pharmacy in India for about $1 each (remember again,, this was 2008. Viagra was unaffordable,, and my insurance had already told me,, "No Way,, Jose" are we going to fund this odd off label use.

He also had me get a penis pump, which the insurance did pay for, and he instructed me to pump daily, but avoid any climax. If this sounds strange,, so it did to me. But I followed his instructions.

Dr X had spent 2 hours and 45 minutes on the operation, working on me from a console on the other side of the room. You can view a Da Vinci prostatectomy on YourTube. Your key to your future sexual function is the surgeon's ability to tease the erectile nerves from around the prostate gland without damaging them. It takes time.

Dr X was seeing me weekly, and a month or five weeks after the operation, he said "I want to you go have sex". And so I did,, thanks to a sympathetic wife, the viagra, and the pump.
It was great. I had an uneventful recovery,, lots of sex, and am still sexually active at 78.
Of course,, I don't ejaculate,, but you can't have everything. The orgasm is still strong, and now I buy my "viagra" in Mexico (I live in Tucson) for $1 a tab,, and cut it in half.

I found this board because I want to go on HRT, specifically some form of testosterone. I stumbled across a post on Lupron. I'm right at the border of what my insurance would consider fundable for HRT, maybe 50 points too high. I was considering a month's worth of lupron just to get the number down below 200.

I had a 3 month lupron depot when the cancer was discovered. Few urologists will pass up this profit center if it's indicated. It was meant to buy me time until I discovered what I wanted to do. The Lupron lasted more than 3 months,, and after the prostatectomy I found that while I was sexually functional, I had much reduced libido.

I had a great PCP physician at the time, and in consultation with Dr X they decided that there was no reason I couldn't go on HRT. A month after starting the Androgel,, I had recovered all of my previous interest. I slept better,, was steadier, felt better,, but I discontinued HRT after three months because I just felt that I didn't need it.

So,, anyway,, my idea is to get a lupron shot, a week later get a testosterone test from my PCP, a referral to an endocrinologist , and voilá! I could get the Lupron from India,, or maybe easier,, from Mexico . I'm having my mouth rebuilt by a dentist in Nogales, so I'm down there every two weeks. When he's done,, my teeth will look like the attached photo (my wife), and I'll die with them.

To sum, for me, and I understand that everyone is different, removing my prostate was the best thing that happened to me. I had difficult to live with BHP, my life was focused on the nearest restroom; now I pee like a racehorse.

For you, the lesson is to choose your surgeon carefully. My wife is considerably younger than me, and was an OR nurse in a surgery center until a couple of years ago. Within the confines of HIPPA (naming no names), she would often comment on the highly different abilities of the surgeons she assisted. Some were talented artists,, some struggled.
My PSA remains undetectable (I still test it every year as part of my blood work). My other advice is,, do your due diligence. All the information you need is on the internet, much more available than it was in 2008. With the information you glean,, you will be able to make the decision that is right for you.

Good luck!
I remember how scary it was.

REPLY
@keywestpirate

I stumbled across this site recently. I had prostate cancer in 2008 and was an active participant on a number of bulletin boards,, looking for my solution. One of the things that struck me then was the lack of posts from >>> afterwards, whatever that turned out to be. It would have been nice to hear from someone well after the fact.

I had originally decided against a prostatectomy because of the difficult nature of the operation and questionable outcome (remember,, this was 2008). After several months of research,, and a month traveling around the country looking at the options, I wound up back in Boise, Idaho.

My wife's doctor suggested I take a look at Dr X, an ex boyfriend with s supposedly "terrible bedside manner". What did I have to lose at that point? I had pretty much decided on brachytherapy but knew from my research that the erectile nerves would be dead in two years.

Anyway,, Dr X did indeed turn out to be a character, brusque and a bit intimidating. St Alphonsus had just acquired the "new" Da Vinci robot,, and Dr X had moved from Portland to Boise to take advantage of the new market. He had done over 200 of the surgeries, and seemed overly confident.

I expressed by biggest fear, loss of sexual ability. He insisted that it wouldn't happen under his watch. It was supposed to be one night in the hospital,, it turned out to be two due the fact I had been a little too thorough with the GoLytely and they couldn't hear any bowel sounds.

I had no pain,, and in fact,, still have some of the Norco I was prescribed. A week after the surgery Dr X removed the catheter and I was continent the following day. It was a disappointment as I had bought this huge package of pads, based on what I had read on the boards!

Dr X had told me earlier that he wanted me to take a low does of Viagra, approximately 25Mg, daily to facilitate blood flow to the area. I managed to get a load of 100 mg tablets of sildenafil citrate from a pharmacy in India for about $1 each (remember again,, this was 2008. Viagra was unaffordable,, and my insurance had already told me,, "No Way,, Jose" are we going to fund this odd off label use.

He also had me get a penis pump, which the insurance did pay for, and he instructed me to pump daily, but avoid any climax. If this sounds strange,, so it did to me. But I followed his instructions.

Dr X had spent 2 hours and 45 minutes on the operation, working on me from a console on the other side of the room. You can view a Da Vinci prostatectomy on YourTube. Your key to your future sexual function is the surgeon's ability to tease the erectile nerves from around the prostate gland without damaging them. It takes time.

Dr X was seeing me weekly, and a month or five weeks after the operation, he said "I want to you go have sex". And so I did,, thanks to a sympathetic wife, the viagra, and the pump.
It was great. I had an uneventful recovery,, lots of sex, and am still sexually active at 78.
Of course,, I don't ejaculate,, but you can't have everything. The orgasm is still strong, and now I buy my "viagra" in Mexico (I live in Tucson) for $1 a tab,, and cut it in half.

I found this board because I want to go on HRT, specifically some form of testosterone. I stumbled across a post on Lupron. I'm right at the border of what my insurance would consider fundable for HRT, maybe 50 points too high. I was considering a month's worth of lupron just to get the number down below 200.

I had a 3 month lupron depot when the cancer was discovered. Few urologists will pass up this profit center if it's indicated. It was meant to buy me time until I discovered what I wanted to do. The Lupron lasted more than 3 months,, and after the prostatectomy I found that while I was sexually functional, I had much reduced libido.

I had a great PCP physician at the time, and in consultation with Dr X they decided that there was no reason I couldn't go on HRT. A month after starting the Androgel,, I had recovered all of my previous interest. I slept better,, was steadier, felt better,, but I discontinued HRT after three months because I just felt that I didn't need it.

So,, anyway,, my idea is to get a lupron shot, a week later get a testosterone test from my PCP, a referral to an endocrinologist , and voilá! I could get the Lupron from India,, or maybe easier,, from Mexico . I'm having my mouth rebuilt by a dentist in Nogales, so I'm down there every two weeks. When he's done,, my teeth will look like the attached photo (my wife), and I'll die with them.

To sum, for me, and I understand that everyone is different, removing my prostate was the best thing that happened to me. I had difficult to live with BHP, my life was focused on the nearest restroom; now I pee like a racehorse.

For you, the lesson is to choose your surgeon carefully. My wife is considerably younger than me, and was an OR nurse in a surgery center until a couple of years ago. Within the confines of HIPPA (naming no names), she would often comment on the highly different abilities of the surgeons she assisted. Some were talented artists,, some struggled.
My PSA remains undetectable (I still test it every year as part of my blood work). My other advice is,, do your due diligence. All the information you need is on the internet, much more available than it was in 2008. With the information you glean,, you will be able to make the decision that is right for you.

Good luck!
I remember how scary it was.

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Thank you for your post. I'm 59, and I will have the surgery next month. I've been sexually active since I was a teenager and wasn't looking forward to losing my ability to perform. Your post gives me hope. I also appreciate the fact that you reached back to us newbies. I'll make sure I do the same, good or bad.

REPLY
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