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Post radical prostatectomy (RP) Challenges

Posted by matthew61 @matthew61, Nov 11, 2023

Hello all, thanks for any input.
I had my RP 11 days ago. Had fairly severe bruising on my left side that seems to be diminishing. Initially it was thought that is was caused by my semi-violent wake-up from anesthesia. Doc gave me Bactrim antibiotic to diminish possibility of infection. Looks, like I am out of the woods on that, but nasty side effects, loss of appetite, constipation and insomnia. On day 7 went in for a systogram and ever since then I have had more/intermittent pain at Catheter site and abdominal area. Urine is flowing well, but is still pretty red. Slight leakage from catheter/penis when doing bowel movement. The results from Systogram was described as “significant leakage” from interior site. So was not able to have catheter removed. Scheduled for fluoroscopy imaging for this Monday. Is this too soon to repair significant leakage? Last night had significant leg cramping. It has been a challenge. Anyone else have a similar experience? I hope not. Thank you

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philsprostate | @philsprostate | Nov 24, 2023
In reply to @kjacko "I’m replying to my own comment. The Doctor called me earlier about the pathology report. The..." + (show)
Profile picture for kjacko @kjacko

I’m replying to my own comment. The Doctor called me earlier about the pathology report. The good news: lymph’s are cancer free. The concerns: my Gleason score was changed from 3+4 to 4+5. Also, there was cancer detected on the prostate capsule. The doctor told me he got it all, but the chance of cancer recurring is now about 20-25(I view it as 75-80% that it won’t). He’ll go over this in detail tomorrow when they take out the catheter. He’ll do a PSA Followup in about 4 months. He has indicted any rise in PSA will necessitate radiation. My doctor is one of the top in Wisconsin. I trust him completely. However, not thoughts from the fraternity?

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Your posts have been most helpful on this site for me. DaVinci Surgery November 8 2023. Excellent Advice on kegels, and supported by my PT friend. My pathology report was good. All margins clear. Catheter out after 12,days.
Told to drink 70-80 ounces water (2100-2400 cc) within 4 hours of removal. Quite the party flush with that. 2 very small clots only.
Took Miralax for constipation and helped that night. All in all pretty good IMO. Routine now is head for bathroom every 2 hours and stand up to urinate. Doing a kegel on way to toilet. This really helps with leakage.
Kegel routine is 10 quick ones, followed by the four second hold and four second relax. I do 10 of those. Trying to do that every hour or so trying to get 80 to 100 in for the day.
my PT friend said then work on up to the six second hold and six second relax. Working for me. Eliminates that 10-15 minute standing there with tissue as you leak. Just a few minutes wiping “leaks” before tucking backing in to Depends Grande pads.
These pads are working well. Good luck everyone.
FYI one night only in hospital with some pain there but pain has been very minimal since I’ve been home. Staples came out along with cath removal.

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perrychristopher | @perrychristopher | Nov 17, 2023
In reply to @kjacko "I’m replying to my own comment. The Doctor called me earlier about the pathology report. The..." + (show)
Profile picture for kjacko @kjacko

I’m replying to my own comment. The Doctor called me earlier about the pathology report. The good news: lymph’s are cancer free. The concerns: my Gleason score was changed from 3+4 to 4+5. Also, there was cancer detected on the prostate capsule. The doctor told me he got it all, but the chance of cancer recurring is now about 20-25(I view it as 75-80% that it won’t). He’ll go over this in detail tomorrow when they take out the catheter. He’ll do a PSA Followup in about 4 months. He has indicted any rise in PSA will necessitate radiation. My doctor is one of the top in Wisconsin. I trust him completely. However, not thoughts from the fraternity?

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It seems both he and you have a good handle on it. Yes, you are correct to look at it as the chances are much higher than it will not reoccur. I am 14 months out from my RALP with no BCR to date.

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hammer101 | @hammer101 | Nov 16, 2023
In reply to @budisnothome "Don't count on the percentage. I had 5.9% chance at 10 years. 16 months after rp..." + (show)
Profile picture for budisnothome @budisnothome

Don't count on the percentage. I had 5.9% chance at 10 years. 16 months after rp it came back. 35 rad treatments and radiation wrecked a lot. Good luck.

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So sorry you have had to go through so much radiation therapy after your RP. Definitely agree, cancer is tricky and you never know if it will come back. One of the main reasons I went with a radical prostatectomy was that it allowed for more follow-up options, if the cancer decides to come back. My doctor said I have a 20% chance for BCR over the first five years. This is all based on averages, so who knows, could be 5% like you, or could be 95%??

Take care and thanks for the reply.

Jim

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kjacko | @kjacko | Nov 16, 2023
In reply to @aiseman "I'm also in Wisconsin. May I ask who was you surgeon?" + (show)
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I'm also in Wisconsin. May I ask who was you surgeon?

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Where do you live?

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budisnothome | @budisnothome | Nov 16, 2023
In reply to @hammer101 "I am doing very good, back to normal one year later. I give all the credit..." + (show)
Profile picture for hammer101 @hammer101

I am doing very good, back to normal one year later. I give all the credit to the grace of God and the Mayo-Rochester medical team that performed the radical prostatectomy and lymphadenectomy (wonderful center of excellence for prostate cancer). I can't emphasize enough the importance of having your RP at a center of excellence like Mayo-Rochester!!

Based on my Gleason Score of 7 (4/3), there is a 20% chance of biochemical reoccurrence over the first five years, but thus far all PSA tests have been undetectable (< 0.1) and I am keeping a positive attitude and praying daily that the prostate cancer is gone forever.

Take care and best wishes to everyone.

Jim

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Don't count on the percentage. I had 5.9% chance at 10 years. 16 months after rp it came back. 35 rad treatments and radiation wrecked a lot. Good luck.

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trusam1 | @trusam1 | Nov 16, 2023
In reply to @kjacko "I’m replying to my own comment. The Doctor called me earlier about the pathology report. The..." + (show)
Profile picture for kjacko @kjacko

I’m replying to my own comment. The Doctor called me earlier about the pathology report. The good news: lymph’s are cancer free. The concerns: my Gleason score was changed from 3+4 to 4+5. Also, there was cancer detected on the prostate capsule. The doctor told me he got it all, but the chance of cancer recurring is now about 20-25(I view it as 75-80% that it won’t). He’ll go over this in detail tomorrow when they take out the catheter. He’ll do a PSA Followup in about 4 months. He has indicted any rise in PSA will necessitate radiation. My doctor is one of the top in Wisconsin. I trust him completely. However, not thoughts from the fraternity?

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My thoughts...don't go down "what if" rabbit holes. Wait for the test results before in depth exploration of what might happen and what to do. There are so many possibilities. If the PSA comes back not undetectable after 3-6 months (above 0.02), make sure you also connect with a medical oncologist who has expertise in prostate cancers. Surgeons may be great at surgery and post-op care, but not necessarily experts in how to manage recurrent/persistent cancer.

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aiseman | @aiseman | Nov 16, 2023
In reply to @kjacko "I’m replying to my own comment. The Doctor called me earlier about the pathology report. The..." + (show)
Profile picture for kjacko @kjacko

I’m replying to my own comment. The Doctor called me earlier about the pathology report. The good news: lymph’s are cancer free. The concerns: my Gleason score was changed from 3+4 to 4+5. Also, there was cancer detected on the prostate capsule. The doctor told me he got it all, but the chance of cancer recurring is now about 20-25(I view it as 75-80% that it won’t). He’ll go over this in detail tomorrow when they take out the catheter. He’ll do a PSA Followup in about 4 months. He has indicted any rise in PSA will necessitate radiation. My doctor is one of the top in Wisconsin. I trust him completely. However, not thoughts from the fraternity?

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I'm also in Wisconsin. May I ask who was you surgeon?

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1 reply
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kjacko | @kjacko | Nov 15, 2023
In reply to @kjacko "Based on a lot of comments I feel pretty fortunate. I had my RP last Tuesday...." + (show)
Profile picture for kjacko @kjacko

Based on a lot of comments I feel pretty fortunate. I had my RP last Tuesday. When I started to wake up the pain was excruciating. With pain meds it subsided quickly. I had an overnight in the hospital that went well. My bed felt like cardboard so they gave me a recliner which was wonderful. They woke me up every hour to check my vitals and every two hours to get up and walk. They had to slow me down. Since then, the pain have been minimal, using only Tylenol for pain. My urine was so what red at first, then darker brown, light brown and normal. They told me much of the color was due to elimination of IV fluids. The day after I had a slight sexual tingling, and a little stronger on Friday. Insomnia has been the toughest hurdle. I’ve had slight drainage, first blood and then a little urine, at the tip of the penis. They told me it is normal. Has gotten less everyday. Only discomfort now is a tickle in my penis and some discomfort in my perenium area. I’m back on a full diet but eat small and slow amounts until my intestines return to normal. As far as constipation, the first few days it was terrible. Milk of Magnesia did not help. When I felt close to a bowel movement and avoiding pushing, I actually did quick short kegels, and than a couple where I “held it”. It really worked. The catheter comes out Thursday, and I’m hoping for a favorable pathology report.
I hope this wasn’t too long. Health and happiness to all in our fraternity.

Jump to this post

I’m replying to my own comment. The Doctor called me earlier about the pathology report. The good news: lymph’s are cancer free. The concerns: my Gleason score was changed from 3+4 to 4+5. Also, there was cancer detected on the prostate capsule. The doctor told me he got it all, but the chance of cancer recurring is now about 20-25(I view it as 75-80% that it won’t). He’ll go over this in detail tomorrow when they take out the catheter. He’ll do a PSA Followup in about 4 months. He has indicted any rise in PSA will necessitate radiation. My doctor is one of the top in Wisconsin. I trust him completely. However, not thoughts from the fraternity?

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keywest19 | @keywest19 | Nov 14, 2023

Thank you! Lifting you up in prayer as well

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