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

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. 👍 

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

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

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.

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.

Sorry to hear the news, as most of us on this forum have said, it's a mixed bag. I had my RARP on 30th June this year, and like you, had a Gleason of 3+4 and, in addition, had a 3+3, so I was only offered RARP or radiotherapy. Radiation therapy wasn't a route I wanted to go down due to other health issues, but I'm glad, if that's the right term, I had the RARP. Getting back to your question, though, it wasn't until I met my surgeon that he said it could leak up to a year after surgery, and like many others on here, everyone has a different experience, some good, some bad. I'm still going through 4 + pads a day and leak worst at night, yet some guys don't leak at night at all. Thankfully, my local health department is supplying me with Tena pads 3 months at a time, so that has saved a few quid again, I think that could be a postcode lottery, unfortunately, for some. I wish I had been advised a bit more around the UTI front, as I've had 3 so far, one at the end of catheter removal and 2 over the past 3 weeks, which hasn't been great. I also had my main surgery wound burst the day the staples came out, so that has been healing as an open wound for several weeks now, as they couldn't re-stich. That said, it isn't painful. My last point would be that the ongoing pain internally is still there, and again, I guess this will be different for us all, but I'm still taking lots of pain meds and finally reducing morphine intake, but can't sit still for too long. 

I hope this helps, but there are plenty of lovely chaps on here that will offer all kinds of support and who have gone through the same journey, the one thing I have learnt over the past few months is be as patient as you can as it could be a slow journey and you just have to roll with it.

If you are up for having a look at my journey so far I have started a YouTube channel here's the title Flashlamacq documenting from diagnosis to present day.

all the best though

take it easy

Cheers

Flash

Oh forgot to add, the ED is an issue and still not working fully down there yet but if you have an understanding partner that will help the recovery I bought a pump and that helped but still a way to go.

Edited by member 15 Aug 2025 at 10:11  | Reason: grammar

Hello again, mate.

Honestly, it's impossible, to say exactly how individuals will recover from surgery or any treatment. 

My op was doddle. I was doing the things I usually did, just days after the op. Only four days after RARP,  I was walking half a mile to the pub, having a few pints and walking back home again back. 

Shopping was not a problem, neither was walking, and I maintained a healthy appetite. I haven't got a dog, but if I had have had one, it wouldn't have been a problem. 

I wanted to get back to normal asap, the only thing I avoided was lifting anything too heavy and digging in the garden.

When the catheter was removed,  I suffered with incontinence for a few months. However, it was just a nuisance, rather than a hindrance. Erectile dysfunction is still a problem but with the help of injections, I've adapted to that.

A lot of blokes set themselves targets after surgery. Some get back to cycling, some hiking, some playing sports. One got back to playing a tuba in his brass band and another mountaineering. I was amazed how quickly they achieved their goals.

Unfortunately, there's a minority, and it's usually due to difficulties during the operation, who take much longer to recover. Some struggle for weeks even months.

There are no certainties in this game. However, I would say, that the vast majority of men who have surgery are able to get on with the chores of everyday living within days.

Edited by member 16 Aug 2025 at 11:04  | Reason: Additional text

Hi,  I have no regrets although I recall inconveniences, trivial things really.  Most things went to schedule although ED only got to about 4/10.

Little things like them not bringing my overnight bag from the theatre prep room for over 24hrs.  I needed the earplugs.  The ward was very noisy at night with bleeping machines, loud snorers.  You've been before I think.

Post op using pads is a learning process.  You don't realise it's filling, then it overflows.  Going for a walk makes you leak more without you knowing.  Luckily my wife had a plastic bag to put on the car seat.  After that I always had a spare.  You can tell by the weight after a while.  I never used more than 2 in a day, some use more. I've been good with continence.  Dry in the morning, then the afternoon as well, then OK.

The other thing I found a bit funny, although some might think it puerile to do so.  It doesn't happen to everyone but I found that if my feelings were aroused by an attractive lady I'd leak a bit.  I became very conscious of what was arousing me.  Such as hugging my wife, I didn't tell her as I wanted it to be good for us. It took a few years for the leaks to subside.

Sitting down on the toilet with the catheter was another learning process as it tugged on what I knew was a fresh join of the urethra to the bladder.   Just take it slowly, do nothing quickly or tugs or stresses in any way.  Going to the loo has to be a slow non straining process and you need to keep your stools soft.

If you can get out of bed in the ward as soon as possible to let them know you're going to be ready for off fast.  I had a catheter bag and a pelvis blood drain bag.  Pick them up and patrol the ward as soon as possible.  They'll say you're going home today, get you dressed but the piece of paper isn't signed until 6.30pm even though you keep asking.   My wife was driving but had to wait a few hours.

The big cut in the middle of the stomach is a barometer of how things might be going inside. It lets you know if you strain it for a few months.  I go to the gym but quickly learnt not to annoy it.   Strangely 9yrs later I've got a small hernia filled with fat, that has a special name, at my belly button where the cut was and have decided to see how it goes.  The nurse said it must have been weakened by the op.

All the best. 

I found unclipping the catheter tube top leg retainer useful to give the pipe some freedom to move worked well when on the loo.