Originally Posted by: Online Community MemberWhen I've been researching NeuroSAFE I thought the main benefits were for quality of life afterwards (ie. the potential to have improved erectile function because more nerves can be spared because they actually check whether they need to remove the nerves during the frozen section dissection, before either preserving them or getting rid.)
In a way, yes but not directly. The main benefit is in minimising the risk of leaving nerve bundles behind if the cancer has already reached them.
Imagine the prostate is an orange with a spider's web wrapped around it - it is technically difficult to remove the orange while leaving the web in place so if it is believed that the cancer is already in the web, everything is removed - quick and easy for the surgeon. If the tumour is small and well contained, it is worth the surgeon trying to leave as much of the web as possible but there are two problems with this - 1) the cancer may already be in the web unseen and b) even if the web is left in place, there is no guarantee that erectile function will recover.
Neurosafe or frozen resection allows the surgical team to have bits of the outer edge of the prostate examined during the op to see whether there is any unseen cancer which could have made it to the web - if all looks clear, the web can be left in place; if cancer is seen at the edge then the web (or that part of the web) is removed. For a man who is choosing surgery but has been told that there is a suspicion of cancer on the outer edge of the prostate, the only option in the past would have been non nerve sparing (removal of the web) which pretty much guarantees erectile dysfunction (with the exception of the occasional medical miracle like Chris C). Neurosafe has suddenly opened up the possibility of going for surgery and retaining some nerve bundles if all looks good. It isn't perfect - hence someone recently having a positive margin after frozen resection - but for a man facing almost certain ED, it is probably worth trying to get.
Neurosafe does not eliminate the risk of ED though, apart from the technical benefit of retaining nerves that would otherwise have been removed. That spider's web is going to be bashed, torn, burnt and bruised ... even with all nerves spared, some men find that ED is a medium or long term problem. The web might be intact but it stops working ... goes on strike, if you like.
For a man with a well contained cancer who has already been identified as suitable for full nerve sparing, it is hard to see what benefit Neurosafe offers apart from reducing the already very low risk of recurrence. In fact, it could work the other way and nerves end up being removed that he would otherwise have kept.
As Dave has said, a positive margin is not a good thing; it means that either some cancer cells may have been left behind (the orange peel has some cancer on it which may or may not have reached the spider's web) OR surgeon error (the surgeon has accidentally cut across the orange and left behind a bit of cancerous orange flesh & peel).
Edited by member 15 Nov 2021 at 23:54
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The good effects of RT are quick it's the bad effects which take time. The good effects are damage to the cancer cells' DNA so next time they divide they die. As cancer cells divide quickly they they die moderately fast, but it still takes about 2 years for them all to be dead, but don't worry, they will die so they are no longer a cancer. Some bad effects come reasonably quick but they are not very bad, such as a bit of bleeding from the rectum etc. The more serious side effects such as incontinence and ED may not happen at all but, nerves and muscles controlling these have all been blasted with RT, and though they will fair much better than cancer cells, some of these cells will die when they next divide, but as they are not cancer cells they will divide several years down the line, and most of them will have repaired the DNA damage and divide successfully, however after ten years, it is plausible that one may have lost half of the ED nerves (do not take these figures as gospel, they are just for illustrative purposes and hopefully in the right ball park) so in ten years time ED incontinence etc may slowly develop. The disadvantage of surgery is that damage to erectile, continence, nerves, muscles, if it happens will happen immediately (fairly small chance of this damage). If I had to risk damage to erections and continence and someone said "when do you want that to happen sooner or later?" I would say later.
Your arguments about HT and inconvenience of RT are all good reason for surgery.
The worst problem is when men think the operation will get everything sorted out and then just carry on with life. If recurrence rate is 30% that can come as a bitter blow, especially if nerves have been damaged and you find your self back at square one, and now facing all the RT and HT you would have had anyway, plus certain bits of your manhood not working.
Of course RT has a similar recurrence rate so just because I am knocking surgery doesn't mean I have anything better to offer.
What is important is that you realise that you have drawn the short straw in life and there is a magic bullet, but a third of the time it misfires and about another third of the time it hits the wrong target.
Now I am an optimist and with only T2 N0 M0 your starting from a very good place, and there is no point in worrying about what if it doesn't work. But just make sure that if it doesn't work you don't fall to pieces and you have the mental resilience to cope with being in this for the long haul.
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Matron refers to a ‘very low risk of recurrence’ following radical prostatectomy, but I and three friends had surgery about the same time, around three years ago, and they all had recurrence requiring adjuvant treatments such as RT and HT.
Not a very representative cohort, of course, as part of any scientific trial!
We are all doing fine now.
Best of luck.
Cheers, John.
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Prostate cancer sometimes makes the lobotomy appealing!
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The main value of Neurosafe is to reduce the risk of positive margins - the only impact it has on risk of ED is if neurosafe is being used to try to avoid non nerve sparing surgery. Having neurosafe does not impact on whether a man recovers erectile function ... you can have full nerve sparing and never have an erection again or partial nerve sparing and a full recovery. It is a bit of a lottery.
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Thanks Lyn. Apologies for sounding dumb but can you explain exactly what you mean by positive margins? I heard the consultant also talk about this but wasn't really sure what he was referring to. I assume it means the distance between healthy tissue and the cancer?? Or have I got the complete wrong end of the stick?!?!? Feeling quite confused. When I've been researching NeuroSAFE I thought the main benefits were for quality of life afterwards (ie. the potential to have improved erectile function because more nerves can be spared because they actually check whether they need to remove the nerves during the frozen section dissection, before either preserving them or getting rid.) Maybe I have got the complete wrong end of the stick though. My head hurts with all the research and anxiety!! If anyone can explain things in layman's terms I've be very grateful! This is all very new to us.
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The margin means the edge of what they cut out, and hence also the edge of what they leave in. So if the margin is positive for cancer they have almost certainly left some cancer cells behind. I believe you are correct in your research on Neurosafe I have never researched this myself so I can't give you any help on that.
BTW did anyone mention brachytherapy, with T2c I would have thought all options were open, and the less invasive the procedure the better chance of quality of life. As radiotherapy and surgery have roughly the same success rate, and as adverse side effects of RT are likely to be ten years down the line rather than immediate (if they happen at all), I would say RT is nearly always the better choice. I should say I was not faced with making a difficult choice my cancer had already decided RT was best. Had I have been given the choice I would have probably chosen surgery, but that was at the beginning of my journey when I had less knowledge.
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Originally Posted by: Online Community MemberWhen I've been researching NeuroSAFE I thought the main benefits were for quality of life afterwards (ie. the potential to have improved erectile function because more nerves can be spared because they actually check whether they need to remove the nerves during the frozen section dissection, before either preserving them or getting rid.)
In a way, yes but not directly. The main benefit is in minimising the risk of leaving nerve bundles behind if the cancer has already reached them.
Imagine the prostate is an orange with a spider's web wrapped around it - it is technically difficult to remove the orange while leaving the web in place so if it is believed that the cancer is already in the web, everything is removed - quick and easy for the surgeon. If the tumour is small and well contained, it is worth the surgeon trying to leave as much of the web as possible but there are two problems with this - 1) the cancer may already be in the web unseen and b) even if the web is left in place, there is no guarantee that erectile function will recover.
Neurosafe or frozen resection allows the surgical team to have bits of the outer edge of the prostate examined during the op to see whether there is any unseen cancer which could have made it to the web - if all looks clear, the web can be left in place; if cancer is seen at the edge then the web (or that part of the web) is removed. For a man who is choosing surgery but has been told that there is a suspicion of cancer on the outer edge of the prostate, the only option in the past would have been non nerve sparing (removal of the web) which pretty much guarantees erectile dysfunction (with the exception of the occasional medical miracle like Chris C). Neurosafe has suddenly opened up the possibility of going for surgery and retaining some nerve bundles if all looks good. It isn't perfect - hence someone recently having a positive margin after frozen resection - but for a man facing almost certain ED, it is probably worth trying to get.
Neurosafe does not eliminate the risk of ED though, apart from the technical benefit of retaining nerves that would otherwise have been removed. That spider's web is going to be bashed, torn, burnt and bruised ... even with all nerves spared, some men find that ED is a medium or long term problem. The web might be intact but it stops working ... goes on strike, if you like.
For a man with a well contained cancer who has already been identified as suitable for full nerve sparing, it is hard to see what benefit Neurosafe offers apart from reducing the already very low risk of recurrence. In fact, it could work the other way and nerves end up being removed that he would otherwise have kept.
As Dave has said, a positive margin is not a good thing; it means that either some cancer cells may have been left behind (the orange peel has some cancer on it which may or may not have reached the spider's web) OR surgeon error (the surgeon has accidentally cut across the orange and left behind a bit of cancerous orange flesh & peel).
Edited by member 15 Nov 2021 at 23:54
| Reason: Not specified
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Thanks Lyn. Really useful and a good analogy with the orange! I guess we need to check where exactly the tumour is and how near to the edge it is before my OH makes his decision
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Originally Posted by: Online Community MemberBTW did anyone mention brachytherapy, with T2c I would have thought all options were open, and the less invasive the procedure the better chance of quality of life. As radiotherapy and surgery have roughly the same success rate, and as adverse side effects of RT are likely to be ten years down the line rather than immediate (if they happen at all), I would say RT is nearly always the better choice. I should say I was not faced with making a difficult choice my cancer had already decided RT was best. Had I have been given the choice I would have probably chosen surgery, but that was at the beginning of my journey when I had less knowledge.
Hi Dave. Thanks for your advice. My husband has almost definitely decided on surgery because of a number of factors. I think psychologically there is the idea that the "cancer" has been removed. Also if you have surgery and get re-occurrence then you can go onto have RT but if you have RT and you get re-occurrence then surgery is then quite problematic. Also my husband hates the idea of being on HT. Doesn't like the idea of his mood changing, putting on weight etc. RT also a long process. The nearest RT centre to us is 40 minutes away. We have a young child, so factoring in that journey every day is something we prefer not to have to do. Plus if you've on HT for a couple of years after, you've always got the cancer on your mind and it's still effecting you. Whereas, with an op, the tumour is out and you can begin the recovery process. I had no idea that it could take 10+ years for the effects of RT to kick in. I knew it might not be immediate but didn't realise it was that long! Hmmmm makes you think!!! Choosing what treatment is such a nightmare!
It is a hard choice but for us and with my husband being so young and fit and healthy we thought the op was the best way. Realise it's different for different people though.
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Blimey Lyn,
even by your standards that was a top post. Not sure I can face another orange for breakfast though 🙄....
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Matron refers to a ‘very low risk of recurrence’ following radical prostatectomy, but I and three friends had surgery about the same time, around three years ago, and they all had recurrence requiring adjuvant treatments such as RT and HT.
Not a very representative cohort, of course, as part of any scientific trial!
We are all doing fine now.
Best of luck.
Cheers, John.
User
Originally Posted by: Online Community MemberMatron refers to a ‘very low risk of recurrence’ following radical prostatectomy, but I and three friends had surgery about the same time, around three years ago, and they all had recurrence requiring adjuvant treatments such as RT and HT.
Not a very representative cohort, of course, as part of any scientific trial!
We are all doing fine now.
Best of luck.
Cheers, John.
Fair point but I am assuming that your 3 friends weren't diagnosed with a T1a
John was dx with a T1a and it turned out to be a T3 ... recurrence not a massive shock after that!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Have you never read my fruit bowl analogy with the grapes and apples? 🤣
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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The good effects of RT are quick it's the bad effects which take time. The good effects are damage to the cancer cells' DNA so next time they divide they die. As cancer cells divide quickly they they die moderately fast, but it still takes about 2 years for them all to be dead, but don't worry, they will die so they are no longer a cancer. Some bad effects come reasonably quick but they are not very bad, such as a bit of bleeding from the rectum etc. The more serious side effects such as incontinence and ED may not happen at all but, nerves and muscles controlling these have all been blasted with RT, and though they will fair much better than cancer cells, some of these cells will die when they next divide, but as they are not cancer cells they will divide several years down the line, and most of them will have repaired the DNA damage and divide successfully, however after ten years, it is plausible that one may have lost half of the ED nerves (do not take these figures as gospel, they are just for illustrative purposes and hopefully in the right ball park) so in ten years time ED incontinence etc may slowly develop. The disadvantage of surgery is that damage to erectile, continence, nerves, muscles, if it happens will happen immediately (fairly small chance of this damage). If I had to risk damage to erections and continence and someone said "when do you want that to happen sooner or later?" I would say later.
Your arguments about HT and inconvenience of RT are all good reason for surgery.
The worst problem is when men think the operation will get everything sorted out and then just carry on with life. If recurrence rate is 30% that can come as a bitter blow, especially if nerves have been damaged and you find your self back at square one, and now facing all the RT and HT you would have had anyway, plus certain bits of your manhood not working.
Of course RT has a similar recurrence rate so just because I am knocking surgery doesn't mean I have anything better to offer.
What is important is that you realise that you have drawn the short straw in life and there is a magic bullet, but a third of the time it misfires and about another third of the time it hits the wrong target.
Now I am an optimist and with only T2 N0 M0 your starting from a very good place, and there is no point in worrying about what if it doesn't work. But just make sure that if it doesn't work you don't fall to pieces and you have the mental resilience to cope with being in this for the long haul.
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Would LOVE to hear your fruit bowl analogy Lyn 🤣 Life right now is definitely NOT a bowl of cherries! 🍒
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Thanks for your advice and perspective Dave, really appreciate it. We're hoping that with a T2 N0 M0 that my husband does have a good chance, but as Lyn stated above, post op the tumour can be upgraded so I'm quite worried about that. Our oncological nurse has told us there is no rush to decide on treatment and to take our time, but I'm thinking, what if it's not T2, it's T3. What if it's more aggressive than we think? The waiting is so hard. We just want the bugger taking out sharpish!
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Oh no you don't it'll give you nightmares. Think of a Stephen King novel but more frightening. I gave up all fruit, and was very cautious even of soft vegetables.
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😂 A great analogy Lyn! 🍊🍒🍓🍎🍉
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Thought I would just leave this here in case anyone else is researching the Retzius Sparing technique...
It's an article by Chris Eden which mentions that anterior tumours currently pose a difficulty in Retzius sparing procedures. So maybe if you have an anterior tumour, this is not the way to go?? It's obviously fairly early days with this technique and not much data has been published on margins and oncological outcomes.
If you want a bit of bedtime reading....
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7155805/
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In the words of Chris Eden "Until every patient leaves the hospital following RP with no trace of cancer remaining, no complications, and full continence and potency, urologists have a moral and ethical obligation to continue to develop their surgical technique to improve their results and thereby patient outcomes. RS-RARP represents one such endeavor, but we can be certain that there will be others. Patient safety remains a paramount concern, but this should not be used as an excuse for complacency or to stifle progress. Clearly, further follow-up in a larger number of cases operated on by surgeons experienced in the technique is needed to determine the true role of RS-RARP in the surgical management of prostate cancer, regularly analyzing one's results to fine-tune the technique and improve results, but in the meanwhile, there is sufficient justification to cautiously and slowly disseminate RS-RARP."
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Some surgeons have huge marketing machines, some cherrypick only patients with T1/T2a diagnoses while in the real world, there are surgeons doing amazing things every day to the best of their ability and in the belief that they can secure a good outcome for the patient.
Just be aware of the marketing machines- for every few men who rave about a particular surgeon, you will find at least one man on here who had a really poor outcome and / or feels the aftercare was inadequate.
The general view in uro-oncology is that in the years to come, people will be horrified and fascinated at the idea that prostates used to be removed surgically ... a bit like a few years ago, it was just automatic that any woman diagnosed with breast cancer had a double mastectomy or people with mental health issues had a lobotomy.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Prostate cancer sometimes makes the lobotomy appealing!
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"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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I think that’s part of the problem Lyn. On this forum I’ve seen a few “names” crop up and there are only a couple of surgeons who have carried out more than 500 ops in the last 3 years (according to the BAUS data). It sometimes makes you feel that if you aren’t opting for these couple of London-based high volume surgeons then you aren’t getting the best. And let’s face it in situations like this we all want the best for our loved ones with the best outcomes. I’ve found it all a bit of a mine field. And I think your point is really valid about certain surgeons having a good PR machine. And unfortunately this becomes self perpetuating as more people get ops done with these people which increases their numbers and thus their reputation.
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Lyn
Loving your orange analogy. Not heard it explained in those terms before. Immaterial for me as I have already gone down the RARP road but instructive nonetheless.
"Some surgeons have huge marketing machines, some cherrypick only patients with T1/T2a diagnoses while in the real world, there are surgeons doing amazing things every day to the best of their ability and in the belief that they can secure a good outcome for the patient."
Never a truer word said!!
Edited by member 17 Nov 2021 at 19:23
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Originally Posted by: Online Community MemberI think that’s part of the problem Lyn. On this forum I’ve seen a few “names” crop up and there are only a couple of surgeons who have carried out more than 500 ops in the last 3 years (according to the BAUS data). It sometimes makes you feel that if you aren’t opting for these couple of London-based high volume surgeons then you aren’t getting the best. And let’s face it in situations like this we all want the best for our loved ones with the best outcomes. I’ve found it all a bit of a mine field. And I think your point is really valid about certain surgeons having a good PR machine. And unfortunately this becomes self perpetuating as more people get ops done with these people which increases their numbers and thus their reputation.
Some publish the proportion of men who were T2b / T3 at diagnosis alongside the rest of their data. The surgeon we chose doesn't have the most amazing stats for positive margins and biochemical recurrence but when you look at his data on BAUS it becomes clear that he has a significant number of patients who are at T3 before surgery and / or are down for RP with adjuvant RT/HT. We chose him because a) he was already the consultant for my dad, father-in-law and mother-in-law so I had met him a number of times and it seemed a good idea to keep with what we knew and b) his stats on ED and incontinence were excellent.
In the end, you can only follow your instincts
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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The word on the street back in 2019 was that NICE are evaluating NeuroSAFE. No given timeline but approval thought to be about five years out.
According to a urologist I spoke to PCa does have a tendency to manifest itself in the anterior portion of the prostate. Mine was very close to breaking through ~1mm and quite a lot of involvement in the base near the bladder neck. The Prof performed using the RS approach but adapted during the procedure to alt-RS and did some bladder reconstruction. Two years on all good. So far using a high volume surgeon who like a technical challenge seems to have paid off. 🍾😵💫 Also worth being mindful that timing is critical it would appear. If I had waited any longer (months) my diagnosis would have gone >T2c and irrespective of surgeon would have potentially had a very different outcome.
Edited by member 18 Nov 2021 at 13:35
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The data speaks for itself. Usually there are checks and controls in place to validate the numbers. In terms of PR and marketing most of urologists who operate privately run a very lean shop with one or two back end staff. I suspect you are highly unlikely to find a large London marketing machine on their books 😀
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The one I am thinking of does indeed have a London marketing company on their books - it is included on the urologist's website map.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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