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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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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Because the surgeon, radiologist, and oncologist all agreed for me RP was my best bet, I went for it mostly because I did not want to risk bladder or bowel problems down the road but so many variables to look at and decide. I was Gleason 3+4 =7 and the mri showed it was probably localized and still in the gland.
It’s a sort a “pick your poison” deal in my opinion. The initial recovery went well for me and in 2 months I was pretty well continent and back to work, driving school bus. I’m 66 now and one year out from surgery. psa still undetectable, thank The Lord. ED is still there and one urologist told me you rarely will get that back without interventions. I just learned I have urethral scar tissue which may become full blown stricture so I may need another surgery for this. I’m looking into it as I was mis diagnosed for a year or undiagnosed until a recent cystoscopy discovered the scarring. I’m told this is rare but does happen. I could have had scarring before RP and catheter aggravated it. Do a lot of homework and get second or third opinions is my advice.

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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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only having stress incontinance at 20 days post surgery sounds pretty good to me. That's what? a week post cath removal? I was right about there at that point, maybe a hair better at most since I didn't use the pads except as an "just in case" item. It was a month before I was told it was okay to work out again so, if memory serves. I was very close to were you are. Is that normal? my team insinuated it was a little better than normal.

Do Those Kegels!

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@web265

only having stress incontinance at 20 days post surgery sounds pretty good to me. That's what? a week post cath removal? I was right about there at that point, maybe a hair better at most since I didn't use the pads except as an "just in case" item. It was a month before I was told it was okay to work out again so, if memory serves. I was very close to were you are. Is that normal? my team insinuated it was a little better than normal.

Do Those Kegels!

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Thanks for the feedback.

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My husband just had retropubic radical prostatectomy one week ago. He’s 55 years old. Everyone is different how they do but can tell you our experience so far. Surgery went well without any concerns or complications. He had a lot of pain for the first couple days after surgery. He wanted off narcotics as soon as possible so pushed it a bit the second night, only taking Tylenol, and had an exhausting night. Gave in and had a last dose of dilaudid the next morning and had a good rest. After that he has steadily improved. Off Tylenol completely as of about five days postop. Urinary catheter takes some getting used to, quite uncomfortable if it gets moved around much but that’s more about getting a system to change from overnight larger urinary bag to the smaller, easier to move around with leg urinary catheter without any pulling or movement of the catheter. He doesn’t much notice the leg urinary bag anymore and feels pretty free with it. He needed help emptying it the first few days as bending that far forward uncomfortable. The larger overnight bag fine as the longer tube makes it easier from him to lift to empty it. He has a moderate amount of edema/swelling in his lower abdomen and scrotum but not painful, no bruising, told typical for this surgery (he also had some lymph nodes removed) and it is expected to be at its worst right now which isn’t bad. He came home on the third day after surgery, just because took until then to be able to walk. He sat up on edge of bed first day postop but became super nauseous. Seems to be common occurrence. Might be worthwhile asking if you can have anti-nausea before your first attempt to stand as the nausea is what held him back that first day. He had Zofran IV when nauseous that first day which settled the nausea right down. Second day they gave him the Zofran antinausea medication an hour before he attempted to get up and he managed to get up to standing for a bit and marching his feet a bit but dizzy and painful and not up to walking yet. Third day he was good to walk. Came home that day but unable to do stairs. Slept in recliner. Next day could do stairs but not able to lie down and get up in bed so slept in recliner again. Third night home he was back in own bed. He has been going for walks outside each day, getting longer each time. Makes him feel a little more normal. The mental stuff is tough, going from athletic and feeling fine to having a urinary catheter and not allowed to lift anything and tough even bending down enough to tie his own shoes. But it is temporary and improving each day. He had blood in urine initially when moved around including some coming out around catheter, including when pushed at all with BM. Minimal bleeding now, just orangish discoloration in urine in bag when he moves a lot. Hmm. What else. He has been on injectable heparin once a day. He was fine doing it himself for a few days then stung extra one day and now I do it for him which he finds easier. First BM was pretty awful as very painful to contract abdomen at all. Be sure to use some sort of stool softener after the surgery as can’t imagine hard stool on those first BMs. I’m sure doctor will suggest something.
It is good for us too reading the posts on this thread. We will get protectors and pads, etc in advance of his urinary catheter removal which is scheduled for next Monday. We get the histology results back then too . . . 😳.
One question for anyone reading this post who has been through RP - my husband has quite a bit of discomfort sitting on regular chairs, just behind base of penis and in front of anus. Surgeon mentioned to expect that and maybe try a donut cushion. We tried a couple but they raise him too much in chair so he can’t use armrests and backs of chairs kind of low to rest head/neck against because he is raised. Has anyone figured a better system to take pressure off that area until it settles down and is more comfortable?

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I took a different path; I had HDR Brachytherapy. 99.7 percent cure expectations… surgery was fine, lots of pain as the urethra was severely damaged. It took eight months to regain a normal, or as normal, as I will ever be, urinary function. Not a pleasant path at all. I was the third longest to heal on record at the Ronald Reagan Medical Center. And my cancer had metastasized already into my bones so I will always have issues to deal with.

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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.

Jump to this post

Which Mayo Clinic did you go to, and how did you choose your surgeon? I was diagnosed Gleason 6 in September 2022 and am not sure my Urologist has enough experience.

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@havhav

My husband just had retropubic radical prostatectomy one week ago. He’s 55 years old. Everyone is different how they do but can tell you our experience so far. Surgery went well without any concerns or complications. He had a lot of pain for the first couple days after surgery. He wanted off narcotics as soon as possible so pushed it a bit the second night, only taking Tylenol, and had an exhausting night. Gave in and had a last dose of dilaudid the next morning and had a good rest. After that he has steadily improved. Off Tylenol completely as of about five days postop. Urinary catheter takes some getting used to, quite uncomfortable if it gets moved around much but that’s more about getting a system to change from overnight larger urinary bag to the smaller, easier to move around with leg urinary catheter without any pulling or movement of the catheter. He doesn’t much notice the leg urinary bag anymore and feels pretty free with it. He needed help emptying it the first few days as bending that far forward uncomfortable. The larger overnight bag fine as the longer tube makes it easier from him to lift to empty it. He has a moderate amount of edema/swelling in his lower abdomen and scrotum but not painful, no bruising, told typical for this surgery (he also had some lymph nodes removed) and it is expected to be at its worst right now which isn’t bad. He came home on the third day after surgery, just because took until then to be able to walk. He sat up on edge of bed first day postop but became super nauseous. Seems to be common occurrence. Might be worthwhile asking if you can have anti-nausea before your first attempt to stand as the nausea is what held him back that first day. He had Zofran IV when nauseous that first day which settled the nausea right down. Second day they gave him the Zofran antinausea medication an hour before he attempted to get up and he managed to get up to standing for a bit and marching his feet a bit but dizzy and painful and not up to walking yet. Third day he was good to walk. Came home that day but unable to do stairs. Slept in recliner. Next day could do stairs but not able to lie down and get up in bed so slept in recliner again. Third night home he was back in own bed. He has been going for walks outside each day, getting longer each time. Makes him feel a little more normal. The mental stuff is tough, going from athletic and feeling fine to having a urinary catheter and not allowed to lift anything and tough even bending down enough to tie his own shoes. But it is temporary and improving each day. He had blood in urine initially when moved around including some coming out around catheter, including when pushed at all with BM. Minimal bleeding now, just orangish discoloration in urine in bag when he moves a lot. Hmm. What else. He has been on injectable heparin once a day. He was fine doing it himself for a few days then stung extra one day and now I do it for him which he finds easier. First BM was pretty awful as very painful to contract abdomen at all. Be sure to use some sort of stool softener after the surgery as can’t imagine hard stool on those first BMs. I’m sure doctor will suggest something.
It is good for us too reading the posts on this thread. We will get protectors and pads, etc in advance of his urinary catheter removal which is scheduled for next Monday. We get the histology results back then too . . . 😳.
One question for anyone reading this post who has been through RP - my husband has quite a bit of discomfort sitting on regular chairs, just behind base of penis and in front of anus. Surgeon mentioned to expect that and maybe try a donut cushion. We tried a couple but they raise him too much in chair so he can’t use armrests and backs of chairs kind of low to rest head/neck against because he is raised. Has anyone figured a better system to take pressure off that area until it settles down and is more comfortable?

Jump to this post

Regarding..."my husband has quite a bit of discomfort sitting on regular chairs, just behind base of penis and in front of anus"
I bought a cushion...
https://smile.amazon.com/gp/product/B01IM5CFZM/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1
It helps with harder straight chairs like a desk chair, but, yes, he'll be elevated a couple inches.

I stayed in the recliner for the most part the first couple weeks or so when sitting, or sort of half reclined on the couch, propped up on pillows.

Unfortunately for me, that sensation stayed around for months. Anytime I sat on a narrow bench at the gym I really felt it. Eventually it goes from light paint to annoyance to "huh, that feels odd" but only on un-padded straight chairs.

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@havhav

My husband just had retropubic radical prostatectomy one week ago. He’s 55 years old. Everyone is different how they do but can tell you our experience so far. Surgery went well without any concerns or complications. He had a lot of pain for the first couple days after surgery. He wanted off narcotics as soon as possible so pushed it a bit the second night, only taking Tylenol, and had an exhausting night. Gave in and had a last dose of dilaudid the next morning and had a good rest. After that he has steadily improved. Off Tylenol completely as of about five days postop. Urinary catheter takes some getting used to, quite uncomfortable if it gets moved around much but that’s more about getting a system to change from overnight larger urinary bag to the smaller, easier to move around with leg urinary catheter without any pulling or movement of the catheter. He doesn’t much notice the leg urinary bag anymore and feels pretty free with it. He needed help emptying it the first few days as bending that far forward uncomfortable. The larger overnight bag fine as the longer tube makes it easier from him to lift to empty it. He has a moderate amount of edema/swelling in his lower abdomen and scrotum but not painful, no bruising, told typical for this surgery (he also had some lymph nodes removed) and it is expected to be at its worst right now which isn’t bad. He came home on the third day after surgery, just because took until then to be able to walk. He sat up on edge of bed first day postop but became super nauseous. Seems to be common occurrence. Might be worthwhile asking if you can have anti-nausea before your first attempt to stand as the nausea is what held him back that first day. He had Zofran IV when nauseous that first day which settled the nausea right down. Second day they gave him the Zofran antinausea medication an hour before he attempted to get up and he managed to get up to standing for a bit and marching his feet a bit but dizzy and painful and not up to walking yet. Third day he was good to walk. Came home that day but unable to do stairs. Slept in recliner. Next day could do stairs but not able to lie down and get up in bed so slept in recliner again. Third night home he was back in own bed. He has been going for walks outside each day, getting longer each time. Makes him feel a little more normal. The mental stuff is tough, going from athletic and feeling fine to having a urinary catheter and not allowed to lift anything and tough even bending down enough to tie his own shoes. But it is temporary and improving each day. He had blood in urine initially when moved around including some coming out around catheter, including when pushed at all with BM. Minimal bleeding now, just orangish discoloration in urine in bag when he moves a lot. Hmm. What else. He has been on injectable heparin once a day. He was fine doing it himself for a few days then stung extra one day and now I do it for him which he finds easier. First BM was pretty awful as very painful to contract abdomen at all. Be sure to use some sort of stool softener after the surgery as can’t imagine hard stool on those first BMs. I’m sure doctor will suggest something.
It is good for us too reading the posts on this thread. We will get protectors and pads, etc in advance of his urinary catheter removal which is scheduled for next Monday. We get the histology results back then too . . . 😳.
One question for anyone reading this post who has been through RP - my husband has quite a bit of discomfort sitting on regular chairs, just behind base of penis and in front of anus. Surgeon mentioned to expect that and maybe try a donut cushion. We tried a couple but they raise him too much in chair so he can’t use armrests and backs of chairs kind of low to rest head/neck against because he is raised. Has anyone figured a better system to take pressure off that area until it settles down and is more comfortable?

Jump to this post

2 or 3 times a day during the first week I spent about 15 minutes or so reclining on a soft couch with an ice pack tucked gently between my legs. It seemed to help with the pain and reduce the swelling.

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@paulchen

Which Mayo Clinic did you go to, and how did you choose your surgeon? I was diagnosed Gleason 6 in September 2022 and am not sure my Urologist has enough experience.

Jump to this post

When I found that my PSA was significantly elevated and the PSA increase-velocity was high, I did about 40 hours of online research. The common theme for maximizing the best possible outcome was finding the best surgeon/medical center available to you. For me, this turned out to be the Mayo Clinic in Rochester, MN and Dr. Igor Frank. The Mayo Center has the latest technology and Dr. Igor Frank is a highly ranked surgeon. He was the second surgeon in the US to perform robotic assisted prostatectomies and has been doing them since 2005. Also, his area of focus is very narrow - He performs prostate and bladder cancer surgeries (my research found that focus and repetition were both highly recommended when looking for a surgeon). Please note - You need an experienced surgeon for a radical prostatectomy, your quality of life going forward will depend on it. Based on my age (56) and Gleason Score (7 --> 4/3), I chose the radical prostatectomy and lymphadenectomy. This is the most aggressive option, but I found it gave me the best chance for long term survival and alternate treatment options (if needed) going forward. As mentioned by many others, this decision is personal and is based on what is best for you and your situation.
I am very active, in good shape, thin, and on the lower portion of the age group that has prostate cancer. Recovery from the robotic assisted RP went quite well. For me, the first week was the worst part - Catheter (#1), referred pain in the should from the gas used during surgery (#2), and bowel movement constipation/difficulty with catheter (#3). I used Oxycodone for the night I stayed in the hospital. After that, my wife kept my pain in check by alternating Ibuprofen (3 tablets, 200 mg) & Acetaminophen (2 tablets, 500 mg) every 3 hours. This kept my pain to a low level, very tolerable. Please note - Nothing could control my referred gas pain (occurred when I sat up). I spent the first five days walking or laying at an upward angle in bed. For the first week, anytime I would completely sit up, the referred gas pain in the shoulders was very high.
Overall, my body feels almost normal after three weeks (RP on November 3, 2022). I did find that I was more tired for the first three weeks, but a short nap really helped. For me, I do have incontinence issues following the FP, as I expected to have - leakage after drinking water, approximately one accident per night, unreliable bladder. This is not a big issue, but something that I am glad I was aware of prior to recovery. I am confident that I will regain bladder control, will just take time.
I am still waiting for my final pathology report. This has been a challenge - Previous tests lead my doctor to believe the cancer was contained in the prostate, but this is not known until final pathology is complete for the prostate, seminal vesicles, and lymph nodes.
QUESTION - Has anyone had a negative margin with the pathology report, and later had chemical reoccurrence of their prostate cancer? I found some data from Johns Hopkins that showed with a Gleason Score of 6 (3/3), reoccurrence was almost zero. Because I have a Gleason Score of 7 (4/3), I have not been able to find any data.

Take care,

Jim

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