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7 months on from surgery

User
Posted 28 Apr 2023 at 18:40

Last time I posted on here it was not long before I was due to have surgery, and I was having a few last-minute doubts about it (this is the post). I got some good advice from wise contributors who helped calm me down. I thought that I would check in seven months post operation with an update.

The surgery in September went well. They were able to spare the nerves on both sides, fortunately. I didn’t really have pain after the operation (worst things were the catheter and aches caused by residual CO2 inside the body) and the wounds healed quickly. I was also dry from the time that they removed the catheter after one week, which was a huge relief. The operation wasn’t retzius sparing, but the surgeon (a prof at UCLH) said that he and his team had recently worked out a modification to the standard RALP and they were finding that levels of continence had massively improved. Apparently they are going to write it up as a positive innovation. It certainly worked for me. I’d also done pelvic floor exercises religiously for eight weeks, which probably helped. Histology confirmed negative margins and no other presence of cancer in the prostate apart from the one, small area that had shown up on the MRI and biopsy. I recently had the results from the 6-month PSA test and it was undetectable.

After a couple of dispiriting months of no erections at all, they now seem to be coming back, including some spontaneous ones during the night. Turns out I’m one of the very few people who get intense tinnitus from tadalafil, so I can’t use it, unfortunately (although every now and then I try again, always with the same result — I just did 6 days of it and now my left ear is ringing like crazy, should have known better really...). The andrologist prescribed sildenafil instead. I asked him about there being no evidence that it helps with nerve regeneration, partly because of the short half-life, etc., and he said it wasn’t as simple as that, that there is evidence that the half-life is longer than previously thought, and a load of other stuff I couldn’t follow. It didn’t sound all that convincing, tbh, but he’s the lead in andrology and a professor at a major London teaching hospital, so who am I to argue. Like many others, I found Caverject effective but mightily painful. Invicorp worked well but I only used it once, as in fact I can get by now just with sildenafil. I try to use the pump daily but am not as disciplined about it as I should be. All in all, I’m definitely not back to anything like baseline function but I am doing okay and making progress.

Mostly, I feel pretty good, but occasionally I can’t help feeling gutted about this happening at a relatively young age. I try not to dwell on it though. I can also spiral into pointless fretting about whether I made the right treatment choice and should have asked more about HIFU (I did have one consultation with a specialist at UCLH). I feel like I only really know now, after the fact, what the right questions would have been to ask all the specialists, despite all the research I did at the time. In the end, I have to make a conscious effort not to think about ‘what ifs’, as there is absolutely nothing to be gained from it.

Anyway, for the most part, I know I have been lucky so far. I can do everything I used to before — travelling, exercise, etc. Sometimes I can’t believe that a year ago I hadn’t even been diagnosed and now I have had surgery, largely recovered, and basically gone back to normal life. I am trying not to get ahead of myself, as there was perineural invasion present, so the risk of biochemical recurrence is higher than normal. And there have been some low points that have nothing to do with the treatment itself (e.g. a long, maddening, circular conversation when trying to get travel insurance about whether I had an 'official diagnosis' of erectile disfunction; some people treating me as a walking memento mori, etc.). But for the most part I am pleased with my progress. I was lucky to have a very supportive partner. She's been amazing. This site has also been invaluable for all sorts of things along the way, from understanding treatments to specific issues with the catheter — it’s a really good resource!

User
Posted 28 Apr 2023 at 18:40

Last time I posted on here it was not long before I was due to have surgery, and I was having a few last-minute doubts about it (this is the post). I got some good advice from wise contributors who helped calm me down. I thought that I would check in seven months post operation with an update.

The surgery in September went well. They were able to spare the nerves on both sides, fortunately. I didn’t really have pain after the operation (worst things were the catheter and aches caused by residual CO2 inside the body) and the wounds healed quickly. I was also dry from the time that they removed the catheter after one week, which was a huge relief. The operation wasn’t retzius sparing, but the surgeon (a prof at UCLH) said that he and his team had recently worked out a modification to the standard RALP and they were finding that levels of continence had massively improved. Apparently they are going to write it up as a positive innovation. It certainly worked for me. I’d also done pelvic floor exercises religiously for eight weeks, which probably helped. Histology confirmed negative margins and no other presence of cancer in the prostate apart from the one, small area that had shown up on the MRI and biopsy. I recently had the results from the 6-month PSA test and it was undetectable.

After a couple of dispiriting months of no erections at all, they now seem to be coming back, including some spontaneous ones during the night. Turns out I’m one of the very few people who get intense tinnitus from tadalafil, so I can’t use it, unfortunately (although every now and then I try again, always with the same result — I just did 6 days of it and now my left ear is ringing like crazy, should have known better really...). The andrologist prescribed sildenafil instead. I asked him about there being no evidence that it helps with nerve regeneration, partly because of the short half-life, etc., and he said it wasn’t as simple as that, that there is evidence that the half-life is longer than previously thought, and a load of other stuff I couldn’t follow. It didn’t sound all that convincing, tbh, but he’s the lead in andrology and a professor at a major London teaching hospital, so who am I to argue. Like many others, I found Caverject effective but mightily painful. Invicorp worked well but I only used it once, as in fact I can get by now just with sildenafil. I try to use the pump daily but am not as disciplined about it as I should be. All in all, I’m definitely not back to anything like baseline function but I am doing okay and making progress.

Mostly, I feel pretty good, but occasionally I can’t help feeling gutted about this happening at a relatively young age. I try not to dwell on it though. I can also spiral into pointless fretting about whether I made the right treatment choice and should have asked more about HIFU (I did have one consultation with a specialist at UCLH). I feel like I only really know now, after the fact, what the right questions would have been to ask all the specialists, despite all the research I did at the time. In the end, I have to make a conscious effort not to think about ‘what ifs’, as there is absolutely nothing to be gained from it.

Anyway, for the most part, I know I have been lucky so far. I can do everything I used to before — travelling, exercise, etc. Sometimes I can’t believe that a year ago I hadn’t even been diagnosed and now I have had surgery, largely recovered, and basically gone back to normal life. I am trying not to get ahead of myself, as there was perineural invasion present, so the risk of biochemical recurrence is higher than normal. And there have been some low points that have nothing to do with the treatment itself (e.g. a long, maddening, circular conversation when trying to get travel insurance about whether I had an 'official diagnosis' of erectile disfunction; some people treating me as a walking memento mori, etc.). But for the most part I am pleased with my progress. I was lucky to have a very supportive partner. She's been amazing. This site has also been invaluable for all sorts of things along the way, from understanding treatments to specific issues with the catheter — it’s a really good resource!

User
Posted 12 Jun 2023 at 12:31

Hi Jayney,

Thanks for asking. Things went pretty much as expected with ENT. He confirmed that a very small number of people have this issue with PDE5 inhibitors. The mechanism by which they can damage hearing is not understood, though there is some speculation about it. It's a rare side effect but unfortunately I have it. He said that it's really now a cost/benefit calculation for me. Taking more of these drugs definitely could cause more permanent hearing loss and tinnitus. It could also be that a low enough dose of the right drug will be tolerable. The problem is, you don't know what the effect will be until you try, and the effects are not reversible. So, it's a bit of a bind. The tinnitus is awful and I don't want any more. On the other hand, since I've stopped taking the drugs I can definitely notice some effects (e.g. fewer, less strong nocturnal erections, etc). 

For now, I am staying off them. The andrologist wanted me to start up invicorp again, and I guess I will do that. It might also be that I can get by without anything for a while. I do have some function without any kind of medication. Oddly, from the start the response has been always and only to physical stimulation, with arousal being neither here nor there. So it seems like the nerves connecting to the mental response in the brain are not functioning, while a different set of nerves is still working quite well. Anyway, I'll see how it goes and hope for further recovery. I can't really see injections being a longterm solution for me, and while I know it is an excellent option for some, I'm pretty sure that I will never want an implant, so definitely gutted about the pills. The andrologist still seems quite optimistic about the possibility of recovery, so I'm trying to keep that in mind.

User
Posted 28 Apr 2023 at 19:44
Haha that was me alright. Never again. Still have libido and EF if needed. Just not so raring to go these days. Where there is a positive will the there is a way ok 👍
User
Posted 28 Apr 2023 at 19:51

So pleased for you Londoner74. And yes, this site is amazing for help and support!

User
Posted 30 Apr 2023 at 11:22

Great progress. What dose to tadalafil are you taking? I didn’t really get on with 5mg every other day so agreed with my prof to break the pill in half and give myself 2.5mg daily when needed. Works really well and the prof said it was a great idea as smooths out the the peaks of dose. 

User
Posted 01 May 2023 at 07:58
Tadalafil can also help, though it can give you heartburn.
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User
Posted 28 Apr 2023 at 19:10
All good news and a very positive outlook mate. I’m approaching 8 yrs of incurable Pca since my RP aged 48 and am still mostly good. Interesting what you said about continence. They took my catheter out 2 weeks after operation and I was still in hospital ( don’t ask ). They slipped me into hospital gowns and took me out the front of the hospital to sit in the sun. No pad or anything. Didn’t leak a drip. Probably the fear of wetting myself in public. They said the same — the surgeon was trying something new and I was the eighth in a row with no leakage. Good luck moving forwards.
User
Posted 28 Apr 2023 at 19:41

Thanks Chris. Sorry to hear your Pca is incurable but really glad to know that you are still mostly good eight years on. That is really interesting about the continence, seems like I had a very similar experience to you with that. Although they did let me have a pad for the TWOC!

Btw, I think it was one of your posts that I found very useful when trying Caverject. If I remember correctly you described the pain as being like having it slammed in a car door — a very accurate description from my point of view. I read that and thought, ok, so not just me then...

All the best, and good luck to you too.

User
Posted 28 Apr 2023 at 19:44
Haha that was me alright. Never again. Still have libido and EF if needed. Just not so raring to go these days. Where there is a positive will the there is a way ok 👍
User
Posted 28 Apr 2023 at 19:51

So pleased for you Londoner74. And yes, this site is amazing for help and support!

User
Posted 28 Apr 2023 at 20:05

Thanks very much, Decho!

User
Posted 30 Apr 2023 at 11:22

Great progress. What dose to tadalafil are you taking? I didn’t really get on with 5mg every other day so agreed with my prof to break the pill in half and give myself 2.5mg daily when needed. Works really well and the prof said it was a great idea as smooths out the the peaks of dose. 

User
Posted 30 Apr 2023 at 12:16
Good news about your progress. Interesting that UCLH have found a way of improving standard procedure, which means as the biggest UK Prostatectomy providers more men should benefit.
Barry
User
Posted 30 Apr 2023 at 18:03

Hi TechGuy, I was on 5mg daily of tadalafil. I didn't have any problems with it apart from the tinnitus, but that was quite bad. It seems that nobody really knows much about tadalafil induced tinnitus, including ENT doctors. I did ask the andrologist about taking a lower dose but he thought that it was best to stay away from it completely. He said I could take sildenafil, either 25mg daily or 100mg three times a week, recommending the latter. So that's what I've been doing. I get a bit of facial flushing from it and a few visual distortions, but nothing too bad. I might discuss it at the next andrology appointment though, as 2.5mg every two days sounds like it might be more tolerable, and ideally I'd like to be able to use tadalafil somehow.

User
Posted 30 Apr 2023 at 18:15

Thanks Barry. 

I should probably qualify that I had the op privately in the end (I had no insurance but I was lucky to have enough savings to cover it — thankfully I only needed one night in hospital, as two would have bankrupted me!). I did it that way purely to be sure to get the neurosafe procedure, which I really hope will soon be available on the NHS, once the current trial is complete. But both the surgeon and the anaesthetist — essentially the whole team — were from UCLH. In fact he's the surgeon who has done the highest number of RPs at UCLH every year for the last few years, and I assume that he does it the same way wherever he operates. As you say, it would be great if they really have developed a significant improvement and can use it to benefit a lot of men.

User
Posted 30 Apr 2023 at 18:55

All of the PDE5 inhibitors give me mild inflammation around the nose and eyes which feels like having a cold for a few hours. Guess that’s the dilation effect. Let me know how you get on bouncing it off your doctor.

User
Posted 30 Apr 2023 at 22:19

Yes, I get a bit of that too sometimes with the sildenafil. I took it once when I had a cold and that was a mistake!

I'll let you know how it goes with the doctor.

User
Posted 01 May 2023 at 07:58
Tadalafil can also help, though it can give you heartburn.
User
Posted 06 Jun 2023 at 18:17

                           Hello Londoner 74,  Just been reading about your operation - I see that your procedure was not retzius sparing, but I have the opportunity to have retzius sparing.  Did you do much research into that.  You mention UCLH and a certain professor.  How did you contact him because I am finding it difficult to try to find a league table of how many operations various surgeons carry out.  Did you have a supra pubic catheter?  Glad to hear all is going very well.  All the best Chris.     

User
Posted 06 Jun 2023 at 19:30

Hi Chris C,

I didn't do much research into Rezius sparing, but what I have read on this site looks very encouraging. It seems as though it markedly reduces post-op incontinence for many men in the early stages (outcomes even out at around 12 months, if I remember correctly). I don't know if it is also better for erectile function. In any case, it definitely seems like a good option.

The surgeon I had used a different procedure, and I was dry from the off. I can't know for sure whether that was down to the surgeon and his modified procedure, to me being relatively young and having done a lot of pelvic floor exercises for eight weeks beforehand, or just luck. The surgeon did say that he was getting very good results with the modified procedure though. I didn't have a supra pubic catheter, just a regular one. They removed it after a week.

In terms of knowing how many operations a particular surgeon has done, I'm not sure if there is a clear way of getting that info. Sometimes they have profiles on sites like Doctify where they give some indication. I just asked my surgeon straight out and he told me the number, adding that he had for some years been the highest volume surgeon for RP at the hospital where they do the most RPs in the country. If you'd like me to DM you the name of the surgeon, I'm happy to do that. But it's good that your medical team are offering you a Rezius sparing operation, given the excellent results that people report from it. There are others on this site who know a lot more about it, and some who have had it (I think TechGuy, who is on this thread, did) who will doubtless be able to tell you more.

I'm really sorry you are having to go through this. I know it can be quite bewildering getting to grips with the treatment choices. It seems like you have some good options on the table though.

User
Posted 06 Jun 2023 at 22:33
Hi Londoner, great post and so far so good and long may it continue for you. My oh couldn’t tolerate 5mg of tadalafill either, his issue was severe leg pains so dose was reduced to 2.5mg with no issues. He did use the pump initially but really hated it, painful and just soul destroying! We are now 14 months post op and he’s done amazingly well, and ED is improving - he had 30% nerve sparing on one side only and surgeon said could be 2-3 years before we saw any progress so we are both chuffed. He was continent in the night from when catheter was removed and like you religiously did his exercises before the op and will continue for ever more. He only used the lightest of pads during the day and they were a safety net! So all in all we feel very lucky. There are lows and highs and I get very uptight around test time, he’s far more laid back. We just feel grateful to be where we are today. This forum is amazing, not sure where my head would have been without it. It gave me a vehicle to ask the questions he didn’t want to and for me to drip feed the answers. Thank goodness I reached out, the support is amazing. Best wishes to you x
User
Posted 08 Jun 2023 at 14:30

Hello Londoner74,

Thank you for your prompt reply.  I am new to this site, you mentioned dm, but can you tell me how to do this.  

Regards,

Chris

User
Posted 08 Jun 2023 at 17:54

Hi JayneyP,

Great to hear that your OH is doing so well and that 2.5mg of Tadalafil is working well for him. It sounds like he is making progress ahead of what was predicted, so that's great.

My own issues with PDE5 inhibitors are ongoing. I was a bit stupid to try the tadalafil for a third time, as the tinnitus seems to be worse and longer lasting, or at least harder to adjust to. But more annoyingly, I have since had even worse tinnitus which seems to have been caused by Sildenafil (it came on 30 mins after taking the pill, along with a bit of facial flushing and the slight pink tinge to my vision, which usually indicates the Sildenafil has taken effect). It's the first time that Sildenafil has caused this. So now I haven't taken anything for over two weeks. I went to an audiologist, who confirmed that I've lost more hearing at the top range in the left ear, which is where the worst tinnitus is. I'll see an ENT specialist tomorrow, though I expect they are just going to shrug and say to stay away from the pills. It's a bit gutting, because it seems like I can't take the medication that I really need. I had a routine appointment with andrology at UCLH on Monday, and the doctor said I should leave off all PDE5 inhibitors as otherwise I could do further lasting damage to my hearing. It feels a bit like having to choose between a life of impotence and a life of tinnitus (or, you know, maybe hitting the jackpot and getting both). Since stopping the pills, nocturnal erections have also stopped. The andrologist did say one interesting thing. I mentioned to her that I had seen studies that show that men do markedly better recovering erectile function with daily Tadalafil and that I was worried about my chances without taking it. She said that she doesn't think the studies are reliable because men who are prepared to take a daily pill are generally the most motivated — so they might just be showing that the most motivated have the best recovery. Quite interesting. I still wish I could take the pills though!

User
Posted 08 Jun 2023 at 17:55

Hi Chris,

I haven't used the DM function yet either. Tbh, I just assumed there must be one, but I haven't looked for it. I'll see if I can find it!

User
Posted 12 Jun 2023 at 00:33

Hi Londoner, how did you get on with ENT?

 

User
Posted 12 Jun 2023 at 06:50

Hi Chris

I had a Retzius sparing robotic assisted radical prostatectomy + neuroSAFE back in Nov 2019 with probably the highest volume surgeon in the UK. The professor whocannotbenamedhere works out of Guys London Bridge privately. I found him top notch and have recommended him to a number of chaps in the same situation who have also had good outcomes. The UCLH guys are also very good. Slightly less volumes as the prof appears to be a pioneer in his sphere and back in the 2000s was leading laproscopic urological surgery and teaching new techniques across the EU. Key points to the surgery…going to an NHS teaching hospital appears wise as they have better budgets and this top end kit. At guys they had the latest and greatest Da Vinci robots and spares on site plus top end MRIs etc And I’m always mindful it’s not a bad thing being in a proper hospital should the operation go south and there os a crash team on-site. Retzius sparing data shows quicker recovery times post surgery as less messing with critical nerves that control continence below the bladder. They key point of me and a few guys that also had same surgery is the use of neurosafe. Neurosafe is currently being evaluated by NICE and will probably be widely available after this through the NHS. I’m amazed how many places still don’t use it as gives a new level of visibility during surgery. Effectively they have a pathologist on standby during the op who does a real-time frozen section provisional histology report on your prostate while you are open. This means if there are any suspect margins, as was the case for me, the surgeon can take additional tissue for reassurance. From my perspective not using it is effectively flying blind so can only be a good thing. With my case not using it might have meant too little or too much tissue around the nerve bundles etc could have been taken. Please feel free to should be on DM (inbox email on here) for more info. Cheers Simon

 

User
Posted 12 Jun 2023 at 12:31

Hi Jayney,

Thanks for asking. Things went pretty much as expected with ENT. He confirmed that a very small number of people have this issue with PDE5 inhibitors. The mechanism by which they can damage hearing is not understood, though there is some speculation about it. It's a rare side effect but unfortunately I have it. He said that it's really now a cost/benefit calculation for me. Taking more of these drugs definitely could cause more permanent hearing loss and tinnitus. It could also be that a low enough dose of the right drug will be tolerable. The problem is, you don't know what the effect will be until you try, and the effects are not reversible. So, it's a bit of a bind. The tinnitus is awful and I don't want any more. On the other hand, since I've stopped taking the drugs I can definitely notice some effects (e.g. fewer, less strong nocturnal erections, etc). 

For now, I am staying off them. The andrologist wanted me to start up invicorp again, and I guess I will do that. It might also be that I can get by without anything for a while. I do have some function without any kind of medication. Oddly, from the start the response has been always and only to physical stimulation, with arousal being neither here nor there. So it seems like the nerves connecting to the mental response in the brain are not functioning, while a different set of nerves is still working quite well. Anyway, I'll see how it goes and hope for further recovery. I can't really see injections being a longterm solution for me, and while I know it is an excellent option for some, I'm pretty sure that I will never want an implant, so definitely gutted about the pills. The andrologist still seems quite optimistic about the possibility of recovery, so I'm trying to keep that in mind.

 
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