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What do you wish you'd known before you have a RARP?

User
Posted 12 Aug 2025 at 09:05

Hi I had the bad news that I had prostate cancer last Monday night so I've had a week to do my best to come to terms with it. With a Gleason score of 7 (3+4) and the belief that it's all contained in the prostate, I've been given the choice between RARP and RT.


Even before seeing a surgeon on Saturday, I was leaning very strongly towards RARP but for anyone who made this decision, or anyone connected to them, what do you wish you had known:


1) Before the decision was made


2) Before you turned up at the hospital


I'm trying to be as best prepared as I can be for what lies ahead. I've read that those who regret the decision the least are usually those who did the most research beforehand because they knew what to expect or at least what was possible.

User
Posted 12 Aug 2025 at 10:19

Hello, mate 


I'm sorry that you're having prostate problems, but welcome to the forum.


Your cancer grade and PSA is relatively low and it's prostate confined. If it's any comfort, your bad news could have been a hell of a lot worse.


I'd have thought all treatment options were open to you. Did they not offer active surveillance? In any case, from what you've told us, I can't see any need to rush into anything.


Here's an excellent video on treatment options, covering the possible side effects of each treatment. 


https://youtu.be/zYTU94-8pTc?si=1Z29_l8rbTwF6DHl


I chose RARP because I wanted a quick result. The offer of 7 weeks of radiotherapy and hormone treatment wasn't for me. 


I found the operation a doddle, just an overnight hospital stay. Incontinence was an issue for about 6 months. Erectile dysfunction seems to be a permanent curse, but I've adapted by using penile injections.


Overall, there seems to be little difference between most treatments. However individual's side effects can vary enormously. You'll hear good and bad stories of whatever treatment you chose.


Treatments are improving all the time, but currently, I think you'd be very lucky, whatever route you chose, to avoid all side effects and come out of it completely unscathed.


On top of possible side effects, there is always a chance of recurrence, but again that applies to all treatments.


I think it helps to be decisive. Pick your treatment, stick with it, and never have regrets. 


Please keep us updated and I wish you the best of luck. πŸ‘ 

Edited by member 12 Aug 2025 at 10:28  | Reason: Additional text

User
Posted 12 Aug 2025 at 12:18

Hi,


For me, I wish I'd known the psychological impact of ED. I had nerve sparing surgery, but it took a long time for things to start working again and seriously put me on a low ebb for a few months. As for incontinence, I was lucky to have no issues. 


Probably best to press your surgeon on nerve sparing and likely recovery times, considering the location of your tumour etc. Mine just referred me to the standard statistics. 


I'm over five and a half years post op and things are great but it's been a long and difficult journey at times. 


Good luck,


Kev.

Edited by member 12 Aug 2025 at 12:20  | Reason: Typo

User
Posted 12 Aug 2025 at 17:26

My diagnosis was Gleason 7 (4+3) and I had a RALP with nerve sparring on one side almost exactly 1 year ago. Post operation histology showed the cancer had spread to the surface of the gland but no further. Do I regret it, no. The cancer, along with my prostate has gone. I'm pretty well 100% continent and have been for some time. I really use pads for insurance rather than absorption. I still run and cycle regularly without any effects or leakage.


As for erectile disfunction , that's different and still a work in progress. The ED nurse told me it could take 2 years when we last spoke. I'm not sure whether she was trying to cheer me up.


Good luck with the operation and recovery.

User
Posted 13 Aug 2025 at 13:19

Adrian thanks - hope your recovery also going well. Not popped in for a drink to virtual pub recently too busy enjoying the weather! As you say the headaches for my wife have reappeared - can’t see the link!!!! Whenever I feel a bit down for whatever reason I just pep myself up with the thought how lucky I am to have been diagnosed early with treatment options. There are sadly some who aren’t so lucky and really feel for them and their families 

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User
Posted 12 Aug 2025 at 10:19

Hello, mate 


I'm sorry that you're having prostate problems, but welcome to the forum.


Your cancer grade and PSA is relatively low and it's prostate confined. If it's any comfort, your bad news could have been a hell of a lot worse.


I'd have thought all treatment options were open to you. Did they not offer active surveillance? In any case, from what you've told us, I can't see any need to rush into anything.


Here's an excellent video on treatment options, covering the possible side effects of each treatment. 


https://youtu.be/zYTU94-8pTc?si=1Z29_l8rbTwF6DHl


I chose RARP because I wanted a quick result. The offer of 7 weeks of radiotherapy and hormone treatment wasn't for me. 


I found the operation a doddle, just an overnight hospital stay. Incontinence was an issue for about 6 months. Erectile dysfunction seems to be a permanent curse, but I've adapted by using penile injections.


Overall, there seems to be little difference between most treatments. However individual's side effects can vary enormously. You'll hear good and bad stories of whatever treatment you chose.


Treatments are improving all the time, but currently, I think you'd be very lucky, whatever route you chose, to avoid all side effects and come out of it completely unscathed.


On top of possible side effects, there is always a chance of recurrence, but again that applies to all treatments.


I think it helps to be decisive. Pick your treatment, stick with it, and never have regrets. 


Please keep us updated and I wish you the best of luck. πŸ‘ 

Edited by member 12 Aug 2025 at 10:28  | Reason: Additional text

User
Posted 12 Aug 2025 at 10:36
No I wasn't offered active surveillance. Perhaps it's because I've got a history of prostate cancer on both sides of my family tree.
I've read a lot about the different side effects of both treatment options.

My natural instinct is to want to get this thing out of me as quick as possible.

What I've got in mind with this thread is all sorts of little practical things that you don't think of asking but it would have helped to have known earlier.

ED is an obvious concern but what seems to be freaking me out at the moment is the thought of having to use incontinence pads. It's something I've never had to think about before. Do people have a preference for particular brands and if so why? Of course that's jumping ahead as I have the issue of the catheter to deal with first. I had to have one for about ten days when I was in hospital 15 years ago but it was taken out before I was sent home, so I didn't have the responsibility of dealing with it.

User
Posted 12 Aug 2025 at 12:18

Hi,


For me, I wish I'd known the psychological impact of ED. I had nerve sparing surgery, but it took a long time for things to start working again and seriously put me on a low ebb for a few months. As for incontinence, I was lucky to have no issues. 


Probably best to press your surgeon on nerve sparing and likely recovery times, considering the location of your tumour etc. Mine just referred me to the standard statistics. 


I'm over five and a half years post op and things are great but it's been a long and difficult journey at times. 


Good luck,


Kev.

Edited by member 12 Aug 2025 at 12:20  | Reason: Typo

User
Posted 12 Aug 2025 at 17:01

For me it was to act quickly as mine was very close to breaking out of the prostate capsule. My local team said there was no rush and I could wait. I got a second opinion from a top London surgeon professor and had it out in the same month at London Bridge (Guys) Cancer centre (Retzius sparing RARP + NeuroSAFE). Never looked back and post-op histology showed I was indeed wise to have not kicked the can down the road.

Edited by member 12 Aug 2025 at 17:01  | Reason: Not specified

User
Posted 12 Aug 2025 at 17:26

My diagnosis was Gleason 7 (4+3) and I had a RALP with nerve sparring on one side almost exactly 1 year ago. Post operation histology showed the cancer had spread to the surface of the gland but no further. Do I regret it, no. The cancer, along with my prostate has gone. I'm pretty well 100% continent and have been for some time. I really use pads for insurance rather than absorption. I still run and cycle regularly without any effects or leakage.


As for erectile disfunction , that's different and still a work in progress. The ED nurse told me it could take 2 years when we last spoke. I'm not sure whether she was trying to cheer me up.


Good luck with the operation and recovery.

User
Posted 13 Aug 2025 at 07:32

Everyone is different. I was in the same boat as you nearly 3 years ago and went with surgery. Although id researched the side effects and been told about them nothing can prepare you for the aftermath as you’ve no idea how you will react until you are in the situation. 21/2 years post op I’m happy with my decision - fingers crossed the cancer is gone which was the objective (cannot ever say gone!) My ED has started to improve over the last couple of months much to my wife’s horror as she’d thought her prayers had been answered! Re incontinance that’s been my major issue and initially got me down but things improved. I still wear a pad one a day for security for the odd squirt when I laugh cough exercise etc but no floods. It’s something I’ve come to accept and live with as a trade off but being hopefully cancer free which after all is the object of surgery. Good luck and welcome to the club no one wants to be in. Sorry you’ve had to join. 

User
Posted 13 Aug 2025 at 08:15

Originally Posted by: Online Community Member
My ED has started to improve over the last couple of months much to my wife’s horror as she’d thought her prayers had been answered!


Yep, my wife's old pre-sex headaches have returned when I'm preparing an Invicorp injection.


Perhaps the site should provide a support group for wives whose partners are 'springing' back to life. 😁


Joking apart, mate. It's great to hear that your recovery is continuing.πŸ‘

Edited by member 13 Aug 2025 at 14:00  | Reason: Spelling

User
Posted 13 Aug 2025 at 13:19

Adrian thanks - hope your recovery also going well. Not popped in for a drink to virtual pub recently too busy enjoying the weather! As you say the headaches for my wife have reappeared - can’t see the link!!!! Whenever I feel a bit down for whatever reason I just pep myself up with the thought how lucky I am to have been diagnosed early with treatment options. There are sadly some who aren’t so lucky and really feel for them and their families 

User
Posted 14 Aug 2025 at 16:49
Hi spinone.
As everyone has & will comment it is totally different for everyone & some will say surgery others will go down radiation & other routes HIFU for instance, like Adrian I decided on the surgery as I wanted the quick route rather than the weeks of radiation.
I had surgery on a Friday afternoon was released from the hospital on the Saturday lunch time with a catheter in situ. Now the catheter is slightly uncomfortable but with a slight adjustment of straps & one of those elasticated thigh straps used for thigh strains I tucked the bag into there, not a problem walking around with it like that. I had my twoc ( trial without catheter. 7 days later & not a problem I was only in the hospital an hour from catheter removal to passing the water test to make sure you’re emptying your bladder. I did take some pads with me in case of accidents but it was not an issue, the only issue I had & that was from sitting to standing was a slight leak for a couple of days, I did buy some complete incontinence pants from Amazon but fortunately never needed them & just used the Tena lights for a few weeks for security,( only used 2 a day.).
I am a bit of a keep fit freak & tend to road run 3 miles a day & go to the gym 3 times a week, now this is where I think my incontinence issues or lack of helped as part of my gym routine I always do 2 sets of incline sit ups which of course builds your pelvic floor muscles hence you can hold your waterworks better. So my advice to anyone preparing for surgery start your pelvic floor exercises as soon as possible. I was back to running at the 6 week period that my surgeon had advised to to take it easy, just steady walks up to then.
The ED is a problem but handled with viagra tablets.
Now after all that I think I was very lucky, & others have had a very different journey but I can only give my personal experience.
Most of all keep up your fitness to surgery & pelvic floor / sit ups can only benefit you.
Best of luck Jeff.
User
Posted 14 Aug 2025 at 23:27
How much I would miss getting an erection just because my Seatbelt was a bit tight!

Seriously, I doubt I would change anything about my treatment but it would be nice to just have sex at a moments notice. Now I have to worry about if I have my ring, do I have a pillow? ( A slight Peyronie's causes a bit of difficulty otherwise).
 
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