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Recovery from RARP

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User
Posted 16 Jul 2024 at 18:54

Hi, would welcome advice from anyone who has experienced any challenges post RARP. It's great to read so many of you coming out of it in good shape, while my journey so far has been a rollercoaster ride.

After 4+3 Gleason and PSA score of 25 I had a single port RARP in 04/24. I had rib pains pre surgery but nothing seen in PSMA Pet scan, apart from what was viewed to be fibrous dysplasia. 

Post surgery I've had significant rib pain, hip pain, anal pain and ongoing sensations in pelvic area. Nothing resolved and I think my consultant and GP are sick of seeing me and no progress. Meantime I have had one undetectable PSA and ups and downs of increased and decreased pain and nausea.

I'm not sure what advice I could offer anyone reading this myself, apart from stick with it, but anything welcome. 

User
Posted 18 Jul 2024 at 19:35

David

I had Gleason 3+4 and  RARP in 2019

I had various discomforts in  pelvic area would come and go for many months  maybe two years  or more afterwards. Pain in anus, kicked in the balls feeling, "broken" feeling in penis, and general not right feeling in pelvic floor. I don't recall rib pain except around the stab wounds for a little while.

Pelvic floor discomfort would get worse if I lifted anything heavy or slipped or did some unusual movement

My surgeon put it down to adhesions and scarring and told me to keep walking as the best exercise, but that eventually I would have to start challenging the scar tissue. There's a lot of stuff been rearranged down there

And gradually over time it got better and better. I had a few abortive attempts to get on my bike, eventually I was able to persist and now up to 50km and I don't feel anything

Obviously this is just me - but my experience is it goes away. It was up and down sometimes 2 steps forward one step back. Keep going,  it takes time.

Gerard

User
Posted 16 Jul 2024 at 18:54

Hi, would welcome advice from anyone who has experienced any challenges post RARP. It's great to read so many of you coming out of it in good shape, while my journey so far has been a rollercoaster ride.

After 4+3 Gleason and PSA score of 25 I had a single port RARP in 04/24. I had rib pains pre surgery but nothing seen in PSMA Pet scan, apart from what was viewed to be fibrous dysplasia. 

Post surgery I've had significant rib pain, hip pain, anal pain and ongoing sensations in pelvic area. Nothing resolved and I think my consultant and GP are sick of seeing me and no progress. Meantime I have had one undetectable PSA and ups and downs of increased and decreased pain and nausea.

I'm not sure what advice I could offer anyone reading this myself, apart from stick with it, but anything welcome. 

User
Posted 17 Jul 2024 at 11:18

Hi David,

We have very similar post op histology. I was non nerve sparing, T3a with extra prostatic extension with negative margins. You are doing extremely well regards bladder control. I hope your pains subside, and that you make a full recovery.

Best of luck

 

User
Posted 17 Jul 2024 at 22:15

Following my op at age 52 I had all sorts of aches and pains. Particularly in my right ribs. I also had serious stomach cramps near my groin. All this went on for some time. Clinical nurse said it's your body resetting itself following major surgery. 

User
Posted 18 Jul 2024 at 18:46

Try and just focus on the numbers ie PSA tests. Things do take much longer to settle after this kind of major surgery. I still have pelvic floor discomfort nearly 4.5 years on which started when I had a TPM biopsy done by local team. Nerves have taken a few years to settle and reroute signalling etc You must have had the single port work done up at Guys by the prof with the magic hands? 🙌 😎

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User
Posted 17 Jul 2024 at 07:37

Hi David.

Although most men are only in hospital for a day or two, a prostatectomy is a major op. Like all operations the recovery of individuals will vary enormously.

I'm not medically trained but I doubt your rib pains are due to cancer. Some of the other discomfort maybe due to the op.

The great news is that your PSA result is undetectable. 👍

Have you had the histology results on your removed prostate? 

I know I was a bit sore for many weeks, but I'm fine now. How is your incontinence? Again it took me about 6 months to gain control.

Edited by member 17 Jul 2024 at 08:33  | Reason: Typo.

User
Posted 17 Jul 2024 at 10:36

Thanks Adrian, you're right on different recovery paths, three months on and better in some ways (incontinence issues have passed) but worse in others. Final Gleason 4+3, clear surgical margins, T3aN0 and unilateral nerve spare.

Best, David

 

User
Posted 17 Jul 2024 at 11:18

Hi David,

We have very similar post op histology. I was non nerve sparing, T3a with extra prostatic extension with negative margins. You are doing extremely well regards bladder control. I hope your pains subside, and that you make a full recovery.

Best of luck

 

User
Posted 17 Jul 2024 at 12:05

Thanks Adrian, thanks for sharing that, appreciate it. Here's hoping! 

Best, David 

User
Posted 17 Jul 2024 at 22:15

Following my op at age 52 I had all sorts of aches and pains. Particularly in my right ribs. I also had serious stomach cramps near my groin. All this went on for some time. Clinical nurse said it's your body resetting itself following major surgery. 

User
Posted 18 Jul 2024 at 08:24

Thanks Jim, some of this was post diagnosis, pre surgery, but hoping I am also resetting. 

User
Posted 18 Jul 2024 at 18:46

Try and just focus on the numbers ie PSA tests. Things do take much longer to settle after this kind of major surgery. I still have pelvic floor discomfort nearly 4.5 years on which started when I had a TPM biopsy done by local team. Nerves have taken a few years to settle and reroute signalling etc You must have had the single port work done up at Guys by the prof with the magic hands? 🙌 😎

User
Posted 18 Jul 2024 at 19:35

David

I had Gleason 3+4 and  RARP in 2019

I had various discomforts in  pelvic area would come and go for many months  maybe two years  or more afterwards. Pain in anus, kicked in the balls feeling, "broken" feeling in penis, and general not right feeling in pelvic floor. I don't recall rib pain except around the stab wounds for a little while.

Pelvic floor discomfort would get worse if I lifted anything heavy or slipped or did some unusual movement

My surgeon put it down to adhesions and scarring and told me to keep walking as the best exercise, but that eventually I would have to start challenging the scar tissue. There's a lot of stuff been rearranged down there

And gradually over time it got better and better. I had a few abortive attempts to get on my bike, eventually I was able to persist and now up to 50km and I don't feel anything

Obviously this is just me - but my experience is it goes away. It was up and down sometimes 2 steps forward one step back. Keep going,  it takes time.

Gerard

User
Posted 18 Jul 2024 at 22:05

Yes, I did! Had mixed views on it as didn't know it was likely until very near the time.

Good advice, I'm trying to focus on the numbers despite all the other stuff...

Thanks again.

User
Posted 18 Jul 2024 at 22:10

Thanks Gerard, hopefully you're right, although I wish my surgeon was as reassuring as yours was, rather than bemused. I know it's good advice, based on experience. Thank you.

 
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