The difference is probably that Raiden and Gary both had full nerve sparing.
David, you aren't going to find another surgeon that can give you better odds than 50% that you will regain EF with half the nerves removed. You might find a surgeon who is prepared to offer you full nerve-sparing in the hope that you don't have ED but it is a trade off - you would be going against the advice that at least some of your nerves need to be gone.
This 40% 50% 90% thing is all waffle anyway, depending on who is talking about exactly what parameters. Was the surgeon simply saying that with one bundle removed you have half as much chance of regaining EF? If so, that makes sense and would you really have expected him to say any different? Also, surgeons and PCTs have different ways of defining ED. The NHS outcome stats say:
- 80% of men that have had full nerve sparing can get an erection at 12 months post-op - BUT this includes men who can get a natural erection AND those who can get an erection with a pump, tablets or other chemical means
- men that have kept some nerves are much less likely to get natural erections - but just as likely to be successful with pump, tablets, etc
- men that have had non-nerve sparing can't get natural erections (except in very rare & blessed cases) and tablets won't work but the pump or injections, pellets etc might
There don't seem to be any published statistics in the UK for how many men actually regain erections without any mechanical or chemical help. Perhaps your surgeon was quoting likelihood of these as it would be almost imporssible for him to estimate now whether or not a pump, viagra or muse are going to work for you in the future. If he was talking 40 - 50% chance of natural erections, I would bite his hand off!!!!
The fact is that there are men who have full nerve sparing with one of the best surgeons and never have an erection again. We have a member who had all nerves removed and has been able to regain some natural EF. My husband had half the nerves removed but 4 years after surgery, had recovered natural erections. In hindsight, he might have been better losing all the nerves and being impotent as the surgery didn't cure him.
You have to add into the mix all the men who physically are able to have an erection after surgery but psychologically are so wrecked by the diagnosis, dry orgasms, a sense they have lost their manhood or whatever ghosts they have that they remain impotent. And then there are the men who recover from the surgery but the cancer comes back (or isn't eradicated) for whom erections are pointless because the advancing cancer or the long term hormone treatment has killed any libido.
The best advice I have seen was this - choose the treatment most likely to cure you. Then decide whether you are willing to accept the possible risk of side effects. If you think the risks are too high, choose a less risky option understanding that you are more likely to need further treatment which will also have side effects.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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There were 2 members on here both operated on by a surgeon in Liverpool. One guy was called Gary Adams and the other Raiden. You could message them. Gary reckoned he was achieving erections in about 2 weeks which was unbelievable. Raiden is 8 months post op and achieving full natural sex which is fantastic news. So the surgeon ( if nerve sparing is possible ) seems to be pretty damn good. But you have to remember also that if they really spare the nerves there is more chance they might leave cancer behind. I had double nerve spare. My surgeon said the last guy he did my age ( 48 ) was getting erections 3 weeks post op. I'm now 9 months and have had literally one natural erection that a gerbil would snigger at.
Of course it's all really about saving your life and your continence actually. That's what everyone told me. But it's a tough old ride being left impotent.
I believe you can ask to join the list of an alternative surgeon in a different area.
Best wishes anyway
Chris.
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The difference is probably that Raiden and Gary both had full nerve sparing.
David, you aren't going to find another surgeon that can give you better odds than 50% that you will regain EF with half the nerves removed. You might find a surgeon who is prepared to offer you full nerve-sparing in the hope that you don't have ED but it is a trade off - you would be going against the advice that at least some of your nerves need to be gone.
This 40% 50% 90% thing is all waffle anyway, depending on who is talking about exactly what parameters. Was the surgeon simply saying that with one bundle removed you have half as much chance of regaining EF? If so, that makes sense and would you really have expected him to say any different? Also, surgeons and PCTs have different ways of defining ED. The NHS outcome stats say:
- 80% of men that have had full nerve sparing can get an erection at 12 months post-op - BUT this includes men who can get a natural erection AND those who can get an erection with a pump, tablets or other chemical means
- men that have kept some nerves are much less likely to get natural erections - but just as likely to be successful with pump, tablets, etc
- men that have had non-nerve sparing can't get natural erections (except in very rare & blessed cases) and tablets won't work but the pump or injections, pellets etc might
There don't seem to be any published statistics in the UK for how many men actually regain erections without any mechanical or chemical help. Perhaps your surgeon was quoting likelihood of these as it would be almost imporssible for him to estimate now whether or not a pump, viagra or muse are going to work for you in the future. If he was talking 40 - 50% chance of natural erections, I would bite his hand off!!!!
The fact is that there are men who have full nerve sparing with one of the best surgeons and never have an erection again. We have a member who had all nerves removed and has been able to regain some natural EF. My husband had half the nerves removed but 4 years after surgery, had recovered natural erections. In hindsight, he might have been better losing all the nerves and being impotent as the surgery didn't cure him.
You have to add into the mix all the men who physically are able to have an erection after surgery but psychologically are so wrecked by the diagnosis, dry orgasms, a sense they have lost their manhood or whatever ghosts they have that they remain impotent. And then there are the men who recover from the surgery but the cancer comes back (or isn't eradicated) for whom erections are pointless because the advancing cancer or the long term hormone treatment has killed any libido.
The best advice I have seen was this - choose the treatment most likely to cure you. Then decide whether you are willing to accept the possible risk of side effects. If you think the risks are too high, choose a less risky option understanding that you are more likely to need further treatment which will also have side effects.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Great replies both of you, David best of luck with whatever treatment path you go for and remember when making your mind up that ED is not the number one criteria, being alive is!!
Regards Chris/Woody
Life seems different upside down, take another viewpoint
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I'm not sure how they compile their stats as nobody has had a conversation with me about EF since my post op appointment. Aftercare in my opinion is quite appalling. Obviously I can only comment on my own treatment.
My surgeon who was extremely experienced spoke of two schools of thought. Those who remove everything regardless and those who consider what needs to be removed to try and minimise side effects. Having said that the primary objective of the surgeon has to be preserving life not the preservation of EF or continence. My nerves were spared and since this has caused me a degree of angst as they did not remove all the PCa. I've no idea if they would have got it all if the nerves had been removed. But as always hindsight is a wonderful thing.
I think at the stage you are at everything is a blur. You will listen to others including us on here. This may inform your decision. It may not. I would be guided by the consultant and let him know what your priorities are.
Bri
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D
A very comprehensive and realistic reply there from L.
I spoke to my surgeon several times pre-op about sparring my nerves and his replies were always "my main job is to remove the cancer and save your life". Even my second opinion surgeon who only did open surgery said there may be a chance of saving one bundle but no guarantees, he would not know until he got in there and had a good feel around the prostate. I think in is true to say that the amount / spread cancer in the prostate can only be fully seen when it is under the microscope in the lab.
My operation was described as "non nerve" sparring and I get some natural tumescence and but no erecting, I do however describe myself as "supposedly" non nerve sparring and would agree with the comment " men that have had non-nerve sparing can't get natural erections (except in very rare & blessed cases). Either some nerves were sparred or as my surprised surgeon said "there is a network of nerves down there and it is possible something is still connected".
In answer to your questions.
Apparently there is a list of surgeons and their outcomes but I think someone said it was out of date.
Not sure how you would go about getting treatment from another trust, but I am sure one member recently did it.
Thanks Chris
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Hi David
To some extent, looking for the best surgeon can be a bit like trying to weigh the odds in your favour by only going to accommodation that has glowing Tripadvisor reviews. Personally, you're still going to experience the good, and the not so good.
To continue the analogy, some valued places will be booked up, so you may have to wait longer than you'd like, and if they're deservedly popular, it might be that when you hit 'book' that on arrival you find you're not allocated the master bedroom you were after, but a room of equivalent value ( i.e not the most experienced surgeon, but his/her colleague), and anyway, maybe the whole veracity of such league tables is flawed..
Of course, there is no prostate surgery Tripadvisor. There are no totally incompetent surgeons. You're going to have to put your faith in a surgeon if that's the route you choose. There will be uncertainty. Lyn has eloquently and comprehensively laid this out.
'You can't always get what you want' ( The Rolling Stones) .
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Originally Posted by: Online Community MemberIn answer to your questions.
Apparently there is a list of surgeons and their outcomes but I think someone said it was out of date.
Not sure how you would go about getting treatment from another trust, but I am sure one member recently did it.
Thanks Chris
There is the Daily Mail list of the Top Ten PCa surgeons; this list was compiled (some time ago now) by asking PCa surgeons who they would go to if they needed RP. However, we have at least two members who went to one of the so called Top Ten and pretty much had their lives wrecked. In Capitalman's case, the surgeon refuses to even see him or discuss the appalling side effects he was left with. So no, there are no guarantees. I asked John's uro about the list (he is one of the Golden boys who brought nerve-sparing to the UK as an experimental process all those years ago) and he said that some of the best known uros are 'best known' purely because they have huge marketing machines and fancy websites. Others are best known because they do amazing work, publish their research and are constantly pressing for better practice among their peers. I don't think you can tell from the Daily Mail list which is which :-(
One of the difficulties with assessing a surgeon by his success rates is that some will cherry-pick only those really straightforward cases, especially on their private lists. There are others who may on the face of it have poor outcomes but are brave and agree to operate on people who other doctors have rejected as unsuitable. We have a few members on here that were fortunate enough to find a second opinion surgeon after their initial hospital MDT had said surgery would not be offered.
There was also the Dr Foster website which is what Chris is referring to I think. Dr Foster published the outcomes from loads of different hospitals a couple of years ago - all NHS surgeons have to report their outcomes every so often and the website captured and analysed this. The outcomes are measured in terms of the % of RP patients that had positive margins, % that had to have adjuvant or salvage treatment, % left with permanent incontinence, % that recovered sexual function within a year, % that reached a proper remission and % that survived 10 years. It was a fascinating report but for some reason is no longer downloadable from the internet.
Of course, we have no idea how reliable the reports were from the surgeons - as Bri says, his surgeon has never asked him about these things since, and many men on here are passed from the surgeon to the GP quite quickly post-op. One of the things we liked about John's uro was that he takes all that information down on a pro-forma each time we see him (as he did for all those years for my dad) so when he is asked about his success rates he is able to quote exactly. On the face of it, our Mr P's rates aren't the best in the UK but as I described above, he tends to take on men that other surgeons would balk at and neither J or my dad have any complaints.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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