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Last-minute treatment doubts

User
Posted 11 Sep 2022 at 12:42

Hello, I’m new to this forum as a participant, although I have gained a lot from it in recent months as a reader. I was diagnosed with PCa towards the end of June. My last (and so far only) PSA reading was 3.68. Gleason is 3+4, stage is T2. The cancer is 7mm and is contained within the capsule, located near the apex. I am scheduled for RALP in a week and a half. I’m 47 years old. My father also had PCa, diagnosed when he was 86, at a stage when it was already untreatable. He died from it just over a year later.


It is probably just last-minute nerves, but I am starting to wonder whether I have made the right treatment decision. The multi-disciplinary team that reviewed my case recommended radical prostatectomy. However, the consultant who gave me the diagnosis said that he had not been part of that meeting and that he had a different view. He had been involved in a large study that showed that although RP is usually recommended for younger men, active surveillance actually has just as good outcomes for younger men as for older ones and should have been included as an option in my case. He said that it might be a decade or more before I would need treatment. In fact, there was even a very slim chance that I might never need it. He said that others would disagree and that I should speak to the full range of specialists and get all of the views. The next person I spoke to was a specialist in focal therapy. He did not recommend that for me (I could see why when he explained the rate of recurrence) but instead clearly favoured surgery. He said I would be extremely borderline for AS and, although I might get one, or at the most two years of delay, I would not avoid treatment for this cancer. He also said that there was peri-neural invasion (within the capsule) and that this was a worrying sign, as it is one of the ways in which the cancer can spread. I then spoke with two surgeons. The first dismissed AS completely, saying that 20% of the cancer was pattern 4 and that was too high. The second said that it would be playing with fire and that since the tumour is close to the nerves (the external nerves necessary for erections) I should not delay too long. I had a strange meeting with an oncologist, who essentially just told me how lucky I was to have this particular cancer. In the follow-up letter (though not in the meeting) she explicitly said that she recommended surgery. On this basis, I opted for surgery. It was probably the peri-neural invasion that was decisive for me. The surgical plan prescribed interfascial nerve spare on both sides. I have opted (as in paid) to have Neurosafe, as this might allow for intrafascial nerve sparing instead.


However, I am now starting to wonder whether I have just been overly cautious and whether this is a classic case of screening (at me request) for something that was not causing any issues and might otherwise have sat there for a long time without needing treatment. It seems like a huge thing to undergo if it is not really necessary. I know there is no right answer here, but I would be interested in any opinions. I never got to talk again to the consultant who recommended AS, and perhaps I should have insisted on it. But I notice that the Cancer Research UK online Predict tool gives fairly similar outcomes for survival at 10 years for people in my situation through conservative management and through RP. But then it doesn’t take into account peri-neural invasion or the site of the tumour close to, but not necessarily yet involved with, the external nerves. Of course, it could be that I am just freaking out as the operation approaches.

User
Posted 11 Sep 2022 at 14:23

Hi,


It seems that all younger people are advised to have RALP or AS and that seems one extreme to the other when your PSA is a little low.


I was diagnosed at 70 with PSA 2.19 Gleason 3+4=7 with 5 cores out of 20 positive and the surgeon at my local hospital was pushing me towards Robotic surgery but because i had a friend that had had Brachytherpy i asked if i could speak to the Brachytherapy specialist that was in the hospital at the same time and he felt brachytherapy was a good option with my numbers . I also felt there where less side affect.I believe each specialist has a strong leaning towards his own treatment  but i may be wrong.


I am 6 years on from brachytherapy with Psa 0.04 and was signed off December 2020.If you click on my Avatar you can see my journey so far.

User
Posted 11 Sep 2022 at 15:31

It must be tempting to do nothing, particularly since your father who died of prostate cancer at age 86 may well have had the same scores as you at your age. Personally,  if I had been graded as a Gleason 3+3 with your PSA score I would have opted for AS (but your decision is complicated by the peri-neural invasion) and did in fact do just that. Though I did not know my Gleason score, my PSA was 3.58 when I was first tested at age 60 in May 2018 and  because the finger up the bottom test did not find anything untoward I did nothing more for 3 years. Further PSA tests in March 2021 (5.32) &  April 2021 (5.76) suggested that I should take things further and that is when it was found I did have prostate cancer. The first biopsy in June 2021 found that  some of  the cores taken were cancerous with most Gleason 3+3=6 and less than 5%  Gleason 3+4=7. My staging was T2, M4. I opted for AS then and it was not until a further PSA test in September 2021 found that my PSA had increased to 6.01 that I decided to undergo treatment. A subsequent biopsy found that although the grading was exactly the same the cancer was throughout my prostate. I opted for surgery and my prostate was removed at Addenbrookes late December 2021. The post operative slice and dice of my prostate confirmed that removal had resulted in negative margins (i.e. that it was very likely no cancer cells had been left behind) , that the grading was the same as before (it can increase when the whole prostate is examined) and that I had acted in time as the cancer was just starting to bulge out of the prostate.


We are all different, but with hindsight If I knew in June 2021 what I know now I would not have spent another 3 months on AS. I would have opted for treatment there and then. And for a number of reasons, all detailed on my profile, I would still have opted for surgery.


 


Ivan


 


 


 


 

User
Posted 11 Sep 2022 at 16:20

Hi ,


I have been following this site for the last six years and have gained a lot of help and comfort from the members here but it does seem the specialists tend to steer the younger guys away from brachytherapy as us older guys generally have less years overall. I looked up life expectancy after Brachytherapy and it suggested 12 years so that would make me 82 and my dad died at eighty but not with cancer . He had throat cancer at 50 and survived that so i may  get to mid 80s if i am lucky. Good luck.


John.

User
Posted 11 Sep 2022 at 16:32
You don't muck about when PNI has been identified during the biopsy - it is an indicator of biochemical recurrence later. PNI identified post-op is different. Also, 20% at Gleason grade 4 is quite significant.

The thing to focus on, I think, is that a multi-disciplinary team looked at all your diagnostics and came to a view together - an experienced group of great minds who do this week, week out. Their collective view should be more reliable and considered than the view of a urologist alone ... okay, maybe not in every case but certainly in most cases.

My husband was 3 years older than you at diagnosis; his results were T1 G7 (3+4) N0 Mx with a PSA of 3.1 and only 3 positive cores (well away from the edge) so in theory, would have been suitable for AS. However, both the initial urologist and the one that we asked for a private referral to said that the nomograms were indicating that he was probably in a worse position than the diagnostics suggested. He had the op, at which point it was discovered that he had cancer in every section of his prostate, PNI, para-aortic involvement and bladder involvement. That was 12 years ago - he had a recurrence (as predicted) 10 years ago and successful salvage RT.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 11 Sep 2022 at 18:10

Hi, 


Just about to have RALP myself.


Scores T2a 3+4 PSA 8.7


I am not dissimilar age to yourself.


All options, except AS, were on the table and discussed. The specialists all pointed to surgery for the best possible outcomes going forward. I don't think surgery would be recommend lightly.  Not scientific but just reading on here you can see that many of the 'younger' guys have surgery. There is a good reason for that... Happy to admit that surgery and it's outcomes is not something I want but I trust the judgement of the expertise of the uro-oncology team. 


Good luck with the surgery.

User
Posted 11 Sep 2022 at 20:47
Londoner, I suspect most of the men on this forum went through the same soul-searching you are when they were given their diagnosis and the options. It feels like there isn't a "right" solution, the best you can say is that the MDT recommendation is the most informed guess available.

In many cases AS simply delays the decision a year or two, with the worry that the outcome would have been better with action earlier. (Though to be fair, with only a single PSA reading there isn't yet the slightest indication of how fast it is growing). And in most cases for patients of your age they recommend surgery over radiotherapy (though I agree with others that the brachytherapy option may sometimes not be fully considered, largely because so many centres have little experience). On paper the effectiveness of both is similar though.

It may not be the end of the story anyway, I had RARP which now 6 years later has needed salvage RT (I was rather older than you though). Surgery does have the benefit that recurrence is detected very sensitively, there should be zero residual PSA so rises are easy to monitor. And RT can be used after surgery whereas the reverse order is often ruled out clinically.

Good luck, it is a worrying position to be in but a decision has to be made. And you can get advice at every stage along the way from people on this forum, who have had the same dilemma before you whatever you choose.
User
Posted 11 Sep 2022 at 22:03
As a young man in Prostate Cancer terms, you should have many years over which it could develop, the main reason why young men are generally given a steer towards surgery, In your case, it may be that that it's not just a well contained simple tumour. Furthermore there is a lot of cancer in your family. Also, the MDT have recommended you have RP. In your circumstances, I think most men would opt for sooner than later but it comes down to how you weight it up. It's a big decision but only one you can make having considered it carefully.
Barry
User
Posted 12 Sep 2022 at 16:24

Hi Londoner ,


I had RARP on 2nd september at Guys. I too went through all your fears and trepidations prior to admittance. I was Gleason 3/4 with Pirads 3, 10MM growth . No Other Options were available to me. I had an epidural in my back prior to anaesthetic this is to ease the pain when you recover from Anaesthetic. I had operation at 08:35 and was in recovery at 12:35, on the ward at 16:20 discharged home the following day. Upon discharge they give you a wide range of painkillers and all the catheter equipment. I found the tummy pain and back pain bad for a couple of days,


Wow , what a relief to go a number 2. this was after 4 days . Im now on day 10 and visit hospital tomorrow to have staples and catheter removed ( never look forward to going to hospital but i am tomorrow) , 


I trusted my consultant to know what he was talking about and he had done the procedure some 1200 times so that filled me with a great deal of confidence, Look your consultant up on Wikeipedia he may be on there and hopefully it may help settle your nerves. I hope all goes well with your procedure and wish you good luck and a speedy recovery . I have been out walking and getting my fitness back , but take it very slowly, I cant wait till i am able to get back to my sports going football and playing golf . feel free to inbox me if you wish and i can go through in more deatail . 


all the best 

User
Posted 12 Sep 2022 at 21:30
Hi Colin, thanks for sharing this. Sounds like everything went smoothly and I'm sure it will be a relief to get rid of the catheter tomorrow! Good to know that you are out and about walking too. No doubt you are right to be cautious and to take that slowly.

It seems like we were in quite a similar position - pirads 3, gleason 3/4, etc. I do feel confident in the surgeon. Like yours, he has done a very large number of these ops and I find that reassuring. Of course, I worry about what the side effects will be, but I guess that's just a case of waiting, seeing, and adapting as much as possible.

I hope your recovery continues to go really well and that you'll soon be back on the golf course. Thanks also for the offer of inboxing you -- I might well take you up on it if I think of any more questions pre or after!
User
Posted 14 Sep 2022 at 09:31

Hi Londoner


its a bit daunting pre-op to say the least but so long as you’ve found a high volume surgeon that can do Retzius sparing RARP + neuroSAFE should be spot on. I’d be cautious about active surveillance as even with low grade cancer recent studies are showing the tumours are very capable of silently spreading METs so my view in that regard was to have it out asap. Also be wary of focal treatments as these seem a great option in some cases but prostate cancer tends to be multifocal so you eventually have to have more radical treatment in any case. I was advised against any radiation therapy by two consultants at my age (52) due to potential risks of secondary primary’s later on in life.

User
Posted 14 Sep 2022 at 20:56

Yeah Retzius sparing certainly helped with short term continence recovery. Just seemed to make sense to avoid tampering with the nerves associated with bladder control and indeed erectile function. I’m not perfect with erections as if tired I would need say 2.5mg tadalafil as can get 80% there. If I’ve had a good nights sleep and do plenty of aerobic type exercise then the erections are as good as they were on my 20’s. I had one of my nerve bundles removed due to neurosafe picking up a potential margin but turned out to be false positive on the histology report which was a relief. From all perspectives post op my expectations have been exceeded.


neurosafe is a no brainer in my view and once NICE complete their study become a standard part of RARP. Just seems to make sense to have near real time visibility in respect of margins during surgery rather than flying blind. I suspect in your case with potential perineural invasion neurosafe will be an invaluable tool to optimise those negative margins and hopefully sparing nerve bundle tissue if clear to do so. 


 


Sounds like you are getting excellent advice.


Best of luck and please feel free to ping me on here or pm if needed.

Edited by member 14 Sep 2022 at 21:04  | Reason: Not specified

User
Posted 14 Sep 2022 at 23:46

I would never try to convince a man he is making the wrong treatment choice and in your situation I would make the same RP choice you are making. However, I am surprised by a couple of things you say. Latest studies have shown that there is little between the failure rates of men treated with Surgery, Radiotherapy and HIFU, particularly if a second application of HIFU is administered although Focal Therapy should be limited to suitable men. There comes a point where cancer is too extensive/far advanced for Focal Therapy and would need to be treated more radically. Then whilst it is true that surgery after RT is much more difficult and many Surgeons won't do it, HIFU after RT is well tolerated. In fact I have had HIFU twice as salvage treatment for failed RT and have discussed the subject with the recognised top Focal Expert in the UK. Furthermore, there is no great problem having either RP or RT after HIFU so I don't think your expert is so expert. HIFU failure rate and treatment for failed HIFU is mentioned by the aforementioned internationally recognised Focal Therapy authority. Although this is not your treatment of choice I wouldn't want any body reading this to get the wrong impression. https://www.youtube.com/watch?v=k1P2x-3sAxE


 

Edited by member 14 Sep 2022 at 23:47  | Reason: To highlight link

Barry
Show Most Thanked Posts
User
Posted 11 Sep 2022 at 14:23

Hi,


It seems that all younger people are advised to have RALP or AS and that seems one extreme to the other when your PSA is a little low.


I was diagnosed at 70 with PSA 2.19 Gleason 3+4=7 with 5 cores out of 20 positive and the surgeon at my local hospital was pushing me towards Robotic surgery but because i had a friend that had had Brachytherpy i asked if i could speak to the Brachytherapy specialist that was in the hospital at the same time and he felt brachytherapy was a good option with my numbers . I also felt there where less side affect.I believe each specialist has a strong leaning towards his own treatment  but i may be wrong.


I am 6 years on from brachytherapy with Psa 0.04 and was signed off December 2020.If you click on my Avatar you can see my journey so far.

User
Posted 11 Sep 2022 at 14:55

Thanks John. Great to hear that brachytherapy has worked so well for you -- seems like a really good decision. In my case, the oncologist said that she would not recommend brachytherapy, but she didn't say why. Unfortunately, that was not a great consultation, as, unlike all the others I have had, it was basically a monologue and I couldn't get a word in to ask questions (even at the end she just got up and walked out of the room, still talking!). So I don't know what her reasoning was. Perhaps it was age-related. She did seem quite emphatic about it.

User
Posted 11 Sep 2022 at 15:31

It must be tempting to do nothing, particularly since your father who died of prostate cancer at age 86 may well have had the same scores as you at your age. Personally,  if I had been graded as a Gleason 3+3 with your PSA score I would have opted for AS (but your decision is complicated by the peri-neural invasion) and did in fact do just that. Though I did not know my Gleason score, my PSA was 3.58 when I was first tested at age 60 in May 2018 and  because the finger up the bottom test did not find anything untoward I did nothing more for 3 years. Further PSA tests in March 2021 (5.32) &  April 2021 (5.76) suggested that I should take things further and that is when it was found I did have prostate cancer. The first biopsy in June 2021 found that  some of  the cores taken were cancerous with most Gleason 3+3=6 and less than 5%  Gleason 3+4=7. My staging was T2, M4. I opted for AS then and it was not until a further PSA test in September 2021 found that my PSA had increased to 6.01 that I decided to undergo treatment. A subsequent biopsy found that although the grading was exactly the same the cancer was throughout my prostate. I opted for surgery and my prostate was removed at Addenbrookes late December 2021. The post operative slice and dice of my prostate confirmed that removal had resulted in negative margins (i.e. that it was very likely no cancer cells had been left behind) , that the grading was the same as before (it can increase when the whole prostate is examined) and that I had acted in time as the cancer was just starting to bulge out of the prostate.


We are all different, but with hindsight If I knew in June 2021 what I know now I would not have spent another 3 months on AS. I would have opted for treatment there and then. And for a number of reasons, all detailed on my profile, I would still have opted for surgery.


 


Ivan


 


 


 


 

User
Posted 11 Sep 2022 at 16:20

Hi ,


I have been following this site for the last six years and have gained a lot of help and comfort from the members here but it does seem the specialists tend to steer the younger guys away from brachytherapy as us older guys generally have less years overall. I looked up life expectancy after Brachytherapy and it suggested 12 years so that would make me 82 and my dad died at eighty but not with cancer . He had throat cancer at 50 and survived that so i may  get to mid 80s if i am lucky. Good luck.


John.

User
Posted 11 Sep 2022 at 16:32
You don't muck about when PNI has been identified during the biopsy - it is an indicator of biochemical recurrence later. PNI identified post-op is different. Also, 20% at Gleason grade 4 is quite significant.

The thing to focus on, I think, is that a multi-disciplinary team looked at all your diagnostics and came to a view together - an experienced group of great minds who do this week, week out. Their collective view should be more reliable and considered than the view of a urologist alone ... okay, maybe not in every case but certainly in most cases.

My husband was 3 years older than you at diagnosis; his results were T1 G7 (3+4) N0 Mx with a PSA of 3.1 and only 3 positive cores (well away from the edge) so in theory, would have been suitable for AS. However, both the initial urologist and the one that we asked for a private referral to said that the nomograms were indicating that he was probably in a worse position than the diagnostics suggested. He had the op, at which point it was discovered that he had cancer in every section of his prostate, PNI, para-aortic involvement and bladder involvement. That was 12 years ago - he had a recurrence (as predicted) 10 years ago and successful salvage RT.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 11 Sep 2022 at 16:55

Thanks very much for this reply Ivan. It's definitely useful to hear your story. I'm really glad to know that you acted in time.


In the case of my dad, I don't think that he had PCa that early. In his early 70s he had two operations on the prostate, but as far as I knew they were to do with it being enlarged and there was no mention of cancer. So I'm assuming that the cancer must only have begun later. I've recently learnt that my uncle and grandfather also had prostate issues of some kind -- not sure what, but not cancer, apparently. So there's a lot of prostate trouble in the family (which makes me think that my dad should have been better monitored, but that's another issue...).

User
Posted 11 Sep 2022 at 17:07

Thanks very much for this reply Lyn. Although what you say is obviously concerning in terms of the cancer, it is also very reassuring for me right now in terms of having made the right decision. I'm sure you are right about trusting in the multi-disciplinary team. Up until recently I had been thinking in the same way, telling myself that out of everybody I had spoken to only one had suggested that AS would be possible and all the others had said RP. But then at the last minute I started to have doubts. So your very well-informed reply really helps me to be able to stop worrying about whether or not it was the right choice and just to focus on the operation and the recovery.


Sorry to hear that your husband has had such a tough time of it. Seems like I am starting from quite a similar position to him. I'm very glad to know that his salvage RT was successful. 

User
Posted 11 Sep 2022 at 18:10

Hi, 


Just about to have RALP myself.


Scores T2a 3+4 PSA 8.7


I am not dissimilar age to yourself.


All options, except AS, were on the table and discussed. The specialists all pointed to surgery for the best possible outcomes going forward. I don't think surgery would be recommend lightly.  Not scientific but just reading on here you can see that many of the 'younger' guys have surgery. There is a good reason for that... Happy to admit that surgery and it's outcomes is not something I want but I trust the judgement of the expertise of the uro-oncology team. 


Good luck with the surgery.

User
Posted 11 Sep 2022 at 19:33

Thanks Jim. I agree, the surgeons must of course weigh everything carefully. I think I was just a bit uncertain due to the conversation with the urologist. He did say to me that it is not unusual for there to be friendly disagreements within the team and that they often challenge each other.


Wishing you the best of luck with your surgery.

User
Posted 11 Sep 2022 at 20:47
Londoner, I suspect most of the men on this forum went through the same soul-searching you are when they were given their diagnosis and the options. It feels like there isn't a "right" solution, the best you can say is that the MDT recommendation is the most informed guess available.

In many cases AS simply delays the decision a year or two, with the worry that the outcome would have been better with action earlier. (Though to be fair, with only a single PSA reading there isn't yet the slightest indication of how fast it is growing). And in most cases for patients of your age they recommend surgery over radiotherapy (though I agree with others that the brachytherapy option may sometimes not be fully considered, largely because so many centres have little experience). On paper the effectiveness of both is similar though.

It may not be the end of the story anyway, I had RARP which now 6 years later has needed salvage RT (I was rather older than you though). Surgery does have the benefit that recurrence is detected very sensitively, there should be zero residual PSA so rises are easy to monitor. And RT can be used after surgery whereas the reverse order is often ruled out clinically.

Good luck, it is a worrying position to be in but a decision has to be made. And you can get advice at every stage along the way from people on this forum, who have had the same dilemma before you whatever you choose.
User
Posted 11 Sep 2022 at 22:03
As a young man in Prostate Cancer terms, you should have many years over which it could develop, the main reason why young men are generally given a steer towards surgery, In your case, it may be that that it's not just a well contained simple tumour. Furthermore there is a lot of cancer in your family. Also, the MDT have recommended you have RP. In your circumstances, I think most men would opt for sooner than later but it comes down to how you weight it up. It's a big decision but only one you can make having considered it carefully.
Barry
User
Posted 11 Sep 2022 at 22:58
Thanks J-B and Barry. The point about being able to have RT after surgery but surgery being difficult after RT was definitely one of the things that steered me towards surgery initially. It's a really important point (and I guess even more so in light of what Lyn has said above about the perineural invasion). And of course, my age and the potential remaining years over which the PCa could develop is also a big consideration.

It's really good to have all of these sensible and experienced voices reminding me that this is what the MDT has advised after careful consideration. It helps me to feel more confident again in my initial reasoning that led me towards surgery.
User
Posted 12 Sep 2022 at 16:24

Hi Londoner ,


I had RARP on 2nd september at Guys. I too went through all your fears and trepidations prior to admittance. I was Gleason 3/4 with Pirads 3, 10MM growth . No Other Options were available to me. I had an epidural in my back prior to anaesthetic this is to ease the pain when you recover from Anaesthetic. I had operation at 08:35 and was in recovery at 12:35, on the ward at 16:20 discharged home the following day. Upon discharge they give you a wide range of painkillers and all the catheter equipment. I found the tummy pain and back pain bad for a couple of days,


Wow , what a relief to go a number 2. this was after 4 days . Im now on day 10 and visit hospital tomorrow to have staples and catheter removed ( never look forward to going to hospital but i am tomorrow) , 


I trusted my consultant to know what he was talking about and he had done the procedure some 1200 times so that filled me with a great deal of confidence, Look your consultant up on Wikeipedia he may be on there and hopefully it may help settle your nerves. I hope all goes well with your procedure and wish you good luck and a speedy recovery . I have been out walking and getting my fitness back , but take it very slowly, I cant wait till i am able to get back to my sports going football and playing golf . feel free to inbox me if you wish and i can go through in more deatail . 


all the best 

User
Posted 12 Sep 2022 at 21:30
Hi Colin, thanks for sharing this. Sounds like everything went smoothly and I'm sure it will be a relief to get rid of the catheter tomorrow! Good to know that you are out and about walking too. No doubt you are right to be cautious and to take that slowly.

It seems like we were in quite a similar position - pirads 3, gleason 3/4, etc. I do feel confident in the surgeon. Like yours, he has done a very large number of these ops and I find that reassuring. Of course, I worry about what the side effects will be, but I guess that's just a case of waiting, seeing, and adapting as much as possible.

I hope your recovery continues to go really well and that you'll soon be back on the golf course. Thanks also for the offer of inboxing you -- I might well take you up on it if I think of any more questions pre or after!
User
Posted 14 Sep 2022 at 09:31

Hi Londoner


its a bit daunting pre-op to say the least but so long as you’ve found a high volume surgeon that can do Retzius sparing RARP + neuroSAFE should be spot on. I’d be cautious about active surveillance as even with low grade cancer recent studies are showing the tumours are very capable of silently spreading METs so my view in that regard was to have it out asap. Also be wary of focal treatments as these seem a great option in some cases but prostate cancer tends to be multifocal so you eventually have to have more radical treatment in any case. I was advised against any radiation therapy by two consultants at my age (52) due to potential risks of secondary primary’s later on in life.

User
Posted 14 Sep 2022 at 15:25
Where does he say he is having retzius sparing? I can't see it mentioned?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 14 Sep 2022 at 18:07

Yes, it's not retzius sparing. I was really focused on neurosafe but wasn't particularly aware of retzius as a thing to ask for. Recently, I have read about it a bit more. From what I can see, it is much better for incontinence in the period immediately after the operation but outcomes are about the same after a year. Still sounds preferable though.


Focal treatments never really seemed viable. The specialist in HIFU said that the cancer recurs in about 20% of people within 5-6 years. He also said that once they have 10 years of data he expects that to be a significantly higher percentage. Not great if you could potentially live another 4 decades.


Like TechGuy, I was warned off radiation due to the risk of secondary cancers (although the risk seems relatively low). They also stressed the fact that it would make surgery difficult afterwards if that became necessary. Same applies to HIFU as well.

Edited by member 14 Sep 2022 at 18:11  | Reason: Not specified

User
Posted 14 Sep 2022 at 20:56

Yeah Retzius sparing certainly helped with short term continence recovery. Just seemed to make sense to avoid tampering with the nerves associated with bladder control and indeed erectile function. I’m not perfect with erections as if tired I would need say 2.5mg tadalafil as can get 80% there. If I’ve had a good nights sleep and do plenty of aerobic type exercise then the erections are as good as they were on my 20’s. I had one of my nerve bundles removed due to neurosafe picking up a potential margin but turned out to be false positive on the histology report which was a relief. From all perspectives post op my expectations have been exceeded.


neurosafe is a no brainer in my view and once NICE complete their study become a standard part of RARP. Just seems to make sense to have near real time visibility in respect of margins during surgery rather than flying blind. I suspect in your case with potential perineural invasion neurosafe will be an invaluable tool to optimise those negative margins and hopefully sparing nerve bundle tissue if clear to do so. 


 


Sounds like you are getting excellent advice.


Best of luck and please feel free to ping me on here or pm if needed.

Edited by member 14 Sep 2022 at 21:04  | Reason: Not specified

User
Posted 14 Sep 2022 at 23:46

I would never try to convince a man he is making the wrong treatment choice and in your situation I would make the same RP choice you are making. However, I am surprised by a couple of things you say. Latest studies have shown that there is little between the failure rates of men treated with Surgery, Radiotherapy and HIFU, particularly if a second application of HIFU is administered although Focal Therapy should be limited to suitable men. There comes a point where cancer is too extensive/far advanced for Focal Therapy and would need to be treated more radically. Then whilst it is true that surgery after RT is much more difficult and many Surgeons won't do it, HIFU after RT is well tolerated. In fact I have had HIFU twice as salvage treatment for failed RT and have discussed the subject with the recognised top Focal Expert in the UK. Furthermore, there is no great problem having either RP or RT after HIFU so I don't think your expert is so expert. HIFU failure rate and treatment for failed HIFU is mentioned by the aforementioned internationally recognised Focal Therapy authority. Although this is not your treatment of choice I wouldn't want any body reading this to get the wrong impression. https://www.youtube.com/watch?v=k1P2x-3sAxE


 

Edited by member 14 Sep 2022 at 23:47  | Reason: To highlight link

Barry
User
Posted 15 Sep 2022 at 11:14
Thanks Barry, that's an important corrective and clearly based on a lot of knowledge of the subject. I certainly wouldn't want to put people off HIFU where it is the right choice for them. Initially, it was the thing that I most wanted to have, since it seems to be the least damaging from of treatment, so I was gutted when the specialist wasn't very positive about it. There was another complicating factor in my case, which was the position of the tumour, close to the apex and therefore the sphincter. That didn't make it impossible, apparently, but did make it potentially trickier. It's interesting what you say about it not being an issue to have RP after HIFU. This is not what the specialist told me, but I suppose it just points to the necessity of doing as much research as you can and getting a variety of opinions -- and making sure to go to the top experts. To be honest, it never occurred to me to question it. The video you have linked to is really interesting. The specialist that I spoke to was also at UCLH, so it it is astonishing to me how different his account was to the account in the video, which is dated about a month before I had my consultation.
 
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