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Thoughts/advice please re top RP people (no actual names!)

User
Posted 12 Nov 2021 at 11:42

@Robot A

Due to COVID issues my local trust here in Birmingham decided in March 2020 to stop all non-COVID work.  I managed to get my GP to refer me to the Royal Marsden. This was after I had been interviewed on my local BBC news about the lack of treatment/diagnosis etc.  The treatment there was exemplary. I had RARP in August 2020. Whilst getting my catheter removed I started talking to another patient who was in for the same thing. Turned out he was also a Brummie who had seen my piece on the local news. He had contacted DC direct and had been accepted for treatment. 

Edited by member 12 Nov 2021 at 14:32  | Reason: Not specified

User
Posted 12 Nov 2021 at 11:58
A question for the forum: Does anyone here know for sure if DC does NeuroSAFE on the NHS, or does he only do that privately? His secretary wasn't sure when I asked her a few days ago.

Regards

ToyCollector

User
Posted 12 Nov 2021 at 14:00

We also wanted to know the answer to this!

User
Posted 12 Nov 2021 at 14:31
I think there are a small handful of NHS surgeons that have access to NeuroSafe, and if you are desperate for it (which I would advocate), it’s likely to cost you twenty grand privately.

Money well spent, if you’ve got it!

Cheers, John.

User
Posted 12 Nov 2021 at 17:20

Originally Posted by: Online Community Member
Listening with interest to this post. My husband also recently diagnosed and we're swaying towards surgery. Just trying to find a great surgeon who we might be able to get through the NHS. It seems there's somewhat of a postcode lottery. Does anyone know if you can get referred to one of the top surgeons in London, even if you live miles away? We're based in the NW.

 

You could but you would then have to consider the journey home post-op which could be very uncomfortable, potentially a journey back 7 days later for catheter removal and then what are you going to do about follow up appointments - 6 weeks, 3 months, 6 months for the next 5 years or possibly the rest of his life? Also, if you have surgery out of area, your local services may not be available - district nursing, ED / incontinence support, etc. 

There are centres of excellence with great surgeons practically on your doorstep. 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 12 Nov 2021 at 17:26
The policy is not to name medics and using initials instead is a joke - it takes no brain power at all to work out who DC is, or any of the others. Recommending a particular surgeon or oncologist on here is fraught - if it goes wrong for one person who chose based on posts here, there is the potential for members and, by association, the charity to be blamed. There is also the possibility that a medic takes action against the charity for defamation of character when, inevitably, a member writes about a negative experience. Personally, I want the money we raise for PCUK to be spent on research and support rather than on defending legal action.

In my view, this whole thread needs to be deleted.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 12 Nov 2021 at 20:55

Thanks for your DM Elaine. Much appreciated. Can’t reply via here as I’m a newbie. So will have to contact via email. Does anyone know out of interest when newbies on here can start sending private messages? 

User
Posted 13 Nov 2021 at 11:07

I am scheduled to have my prostate removed at Addenbrookes on 21/12 and like many on here wanted to make sure that I was in good, safe hands. I undertook a deal of research , checked out the private surgeons following advice on here from several members and reviewed the outcome data of the surgeons  who undertake the procedure. Though I would have gone private, at a cost of £22K, if I thought that was by far the best treatment (though one has to bear in mind that many of the surgeons do a mix of private and NHS work), my research told me that the local hospital to me, Addenbrookes, has some excellent surgeons with very good outcomes. So, I have stayed "local"  and will only be a few miles from where I live when I have the operation. It seems that apart from outcomes, one of the important factors to take into account is the number of prostate removal operations a surgeon does a year. It appears that anything over 100 is a good number.

 

Ivan

User
Posted 13 Nov 2021 at 12:51

Robot A

I think you can send private messages when you have been involved in more conversations 

User
Posted 13 Nov 2021 at 13:35

Thanks Ivan. This is reassuring and this is where we’re at at the moment. My husband has pretty much decided RARP is the best way to go. Just need to decide on where to get the op done and who with. It’s a tough decision. All the best surgeons seem to be in London but we’re based in the NW (which we know has some excellent hospitals) so it’s just whether to stay closer to home or go further afield for the actual surgery…

User
Posted 13 Nov 2021 at 14:16

Robot A

Further to your response to my last message, I was diagnosed with prostate cancer in June this year and was on Active Surveillance until a further biopsy in September revealed that the cancer was throughout my prostate. The cancer was still low grade ( 3+4 (Category 2) with only 5% category 2, the rest being category 1), but it was felt by the surgeon that though Active Surveillance was still an option that I was now more likely to die of prostate cancer rather than of something else. My PSA in September was, by the way, 6.01.

I opted for surgery because:

A couple of guys I know had had surgery (both at Addenbrookes in fact) and are still alive, well and fit over 10 years later;

There is a very good chance if the cancer has not spread (mine hasn't) that surgery will remove it once and for all;

If the cancer does come back that you can then have radiotherapy ( If you have RT it is unlikely that you can then have your prostate removed)

Obviously, there are side effects of having your prostate removed and these do need to be thought through.

I have no doubt that if I had not started being tested for PSA in 2018, when I was 60, then it is quite likely, unless symptoms had appeared (they haven't yet), that I would have been oblivious that I had the cancer perhaps until I was in my 70's- by which time the treatment plan would probably have had to be very different. 

 

Ivan

Edited by member 13 Nov 2021 at 15:48  | Reason: Not specified

User
Posted 13 Nov 2021 at 14:40

Thanks Ivan. All the reasons you’ve given for surgery is precisely why my husband is looking at this option. He’s relatively young at 56. We have a young child. So we think surgery will be the best way forward. It’s only when you start to do the research and learn that high volume surgeons (100+ pa) have the best outcomes that you are presented with another dilemma… which surgeon/Trust to choose! It’s a very difficult decision

User
Posted 13 Nov 2021 at 15:56

Lyn Eyre makes a very good point about the need to travel long distances regularly if one opts for such an option. I really had no choice but to make that journey on numerous occasions. The care I recieved @ the Royal Marsden was second to none but parking near the hospital is atrocious/non-existent. Travelling on public transport during the lockdown was not something I wished to undertake. Luckily a good friend was happy to come along for the ride and take control of the car whilst I was being seen.

Unfortunately I have had a biochemical recurrence and  am now looking at adjunct RT.  Travelling from Birmingham to London every day for 4 weeks is impractical so I have been referred to my local Trust for this work. 

Check out your local surgeons @ baus.org.uk . I'm sure you'll find several there who are well regarded and who have the necessary experience.

User
Posted 13 Nov 2021 at 16:16
You may have more success searching for 'intraoperative frozen section prostatectomy' to find NHS hospitals that do it. NeuroSAFE is a technique within a technique. We have a member here who had intraoperative frozen section or NeuroSAFE on the NHS outside London (possibly Manchester or Liverpool?) quite recently but I can't remember his name.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 13 Nov 2021 at 16:18

As advised by Music-Man, the BAUS website gives you a detailed list of surgeons and their outcomes etc. I used it for my research and also googled surgeons names as you can often find additional information about them by doing so-particularly if they also undertake private work, as the 2 robotic surgeons at Addenbrookes do.

The outcomes for surgery and RT are around the same, but for me surgery was the way forward.

 

Ivan

User
Posted 13 Nov 2021 at 16:26

Originally Posted by: Online Community Member
You may have more success searching for 'intraoperative frozen section prostatectomy' to find NHS hospitals that do it. NeuroSAFE is a technique within a technique. We have a member here who had intraoperative frozen section or NeuroSAFE on the NHS outside London (possibly Manchester or Liverpool?) quite recently but I can't remember his name.

Thanks Lyn. Really useful. Will try and do that then. Out of interest does anyone know any negatives regarding The frozen section procedure or NeuroSAFE? From the limited amount I’ve read, it seems to be the “gold standard” procedure regarding RARP atm. This is why we’re wondering whether to seek out a surgeon that does it. Same with the Retzius sparing. Wonder whether this way will become standard in the NHS in the future or whether there are draw backs that we are not aware of. 

User
Posted 13 Nov 2021 at 16:32

Originally Posted by: Online Community Member

Lyn Eyre makes a very good point about the need to travel long distances regularly if one opts for such an option. I really had no choice but to make that journey on numerous occasions. The care I recieved @ the Royal Marsden was second to none but parking near the hospital is atrocious/non-existent. Travelling on public transport during the lockdown was not something I wished to undertake. Luckily a good friend was happy to come along for the ride and take control of the car whilst I was being seen.

Unfortunately I have had a biochemical recurrence and  am now looking at adjunct RT.  Travelling from Birmingham to London every day for 4 weeks is impractical so I have been referred to my local Trust for this work. 

Check out your local surgeons @ baus.org.uk . I'm sure you'll find several there who are well regarded and who have the necessary experience.

yes Music Man, very good points. Just trying to weigh up all the pros and cons. Staying in the NW would be far easier for travel etc and future monitoring, especially as we have a young child. It’s just the volume of prostatectomies carried out up here by individual surgeons are far less than down south/London. I’ve been researching on the baus website. Also don’t think NeuroSAFE/frozen section is offered up here. Going to do some more research. Thanks everyone, you’ve all been really helpful! 

User
Posted 13 Nov 2021 at 20:00

Originally Posted by: Online Community Member

Originally Posted by: Online Community Member
You may have more success searching for 'intraoperative frozen section prostatectomy' to find NHS hospitals that do it. NeuroSAFE is a technique within a technique. We have a member here who had intraoperative frozen section or NeuroSAFE on the NHS outside London (possibly Manchester or Liverpool?) quite recently but I can't remember his name.

Thanks Lyn. Really useful. Will try and do that then. Out of interest does anyone know any negatives regarding The frozen section procedure or NeuroSAFE? From the limited amount I’ve read, it seems to be the “gold standard” procedure regarding RARP atm. This is why we’re wondering whether to seek out a surgeon that does it. Same with the Retzius sparing. Wonder whether this way will become standard in the NHS in the future or whether there are draw backs that we are not aware of. 

There is no 'gold standard' - there is only what you believe is most important. If the risk of incontinence would be unbearable to your husband then retzius sparing RP might be best because statistically, the risk of incontinence is lower than with other RP methods. However, retzius sparing does not reduce the risk of ED, positive margins or recurrence. 

If the cancer is thought to be very close to or just breaking out of the gland and the choice is between nerve sparing RP and non nerve sparing, frozen resection might be worth travelling for. But if the tumour is small and well contained, it is hard to see what benefits there might be. It isn't perfect - someone on here has had a positive margin even though they had NeuroSAFE - and it means being under general anaesthetic for longer, which isn't a problem for most men but would rule some out. 

There was a member on here a while back who went out of area to get a better standard of RP and then got caught between two NHS trusts in a hellish way. The man was left with complete incontinence and the out of area surgeon they had specifically chosen refused to offer any kind of follow up appointment - they didn't even see him for the 6 week post-op check up. As far as he and his Trust was concerned, the service started and ended with the op. Meanwhile, the local hospital urology department said they couldn't help or provide the after-care as he had chosen to go out of area; nor could he access the local incontinence and ED services so the only medical help available to him was his GP. 

I know that others here have gone out of area without the same problems afterwards and I am not saying don't do it; we paid privately (no private health insurance so we had to use our savings) to get the surgeon we wanted, not because he was promising us whizzy techniques or guaranteed outcomes but because we knew he was one of the best and we liked him when we met him. We did have problems getting back into the NHS services afterwards although most of it was resolved eventually. What we perhaps didn't appreciate at the time was that the cost would be much more than just the operation itself. Every PSA test cost us £175 I think, every 3 months for a few years, post-op physio was invoiced separately, £300 every time we see the consultant (and with a recurrence, J is still under the care of the urologist 12 years post-op), etc. 

I suppose what I am saying is that when you are weighing up your options, clarify what the implications might be later. 

Edited by member 13 Nov 2021 at 20:02  | Reason: Typo

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 13 Nov 2021 at 23:48
I had a private consultation with Professor Whocannotbenamedhere at his palatial rooms in the Shard building on London Bridge.

He agreed to put me on his NHS list at a Guildford hospital and the surgery was carried out there. The 130 mile journey home was somewhat uncomfortable, as Her Loveliness did contrive to find every manhole, pothole and drain grating en-route, but we did stop at three pubs on the way home for respite.

All the subsequent follow-up treatments and tests were approved by my local Coventry consultant, who himself recommended Professor Whocannotbenamedhere when I mentioned ‘Retzius Sparing’. Couldn’t really have gone smoother.

Six-monthly PSA test due next week, together with a Covid anti-body test, as I had no reaction whatever to my three jabs, and I wonder if they worked!

Cheers, John.

User
Posted 14 Nov 2021 at 12:21

Originally Posted by: Online Community Member

Originally Posted by: Online Community Member

Originally Posted by: Online Community Member
You may have more success searching for 'intraoperative frozen section prostatectomy' to find NHS hospitals that do it. NeuroSAFE is a technique within a technique. We have a member here who had intraoperative frozen section or NeuroSAFE on the NHS outside London (possibly Manchester or Liverpool?) quite recently but I can't remember his name.

Thanks Lyn. Really useful. Will try and do that then. Out of interest does anyone know any negatives regarding The frozen section procedure or NeuroSAFE? From the limited amount I’ve read, it seems to be the “gold standard” procedure regarding RARP atm. This is why we’re wondering whether to seek out a surgeon that does it. Same with the Retzius sparing. Wonder whether this way will become standard in the NHS in the future or whether there are draw backs that we are not aware of. 

There is no 'gold standard' - there is only what you believe is most important. If the risk of incontinence would be unbearable to your husband then retzius sparing RP might be best because statistically, the risk of incontinence is lower than with other RP methods. However, retzius sparing does not reduce the risk of ED, positive margins or recurrence. 

If the cancer is thought to be very close to or just breaking out of the gland and the choice is between nerve sparing RP and non nerve sparing, frozen resection might be worth travelling for. But if the tumour is small and well contained, it is hard to see what benefits there might be. It isn't perfect - someone on here has had a positive margin even though they had NeuroSAFE - and it means being under general anaesthetic for longer, which isn't a problem for most men but would rule some out. 

There was a member on here a while back who went out of area to get a better standard of RP and then got caught between two NHS trusts in a hellish way. The man was left with complete incontinence and the out of area surgeon they had specifically chosen refused to offer any kind of follow up appointment - they didn't even see him for the 6 week post-op check up. As far as he and his Trust was concerned, the service started and ended with the op. Meanwhile, the local hospital urology department said they couldn't help or provide the after-care as he had chosen to go out of area; nor could he access the local incontinence and ED services so the only medical help available to him was his GP. 

I know that others here have gone out of area without the same problems afterwards and I am not saying don't do it; we paid privately (no private health insurance so we had to use our savings) to get the surgeon we wanted, not because he was promising us whizzy techniques or guaranteed outcomes but because we knew he was one of the best and we liked him when we met him. We did have problems getting back into the NHS services afterwards although most of it was resolved eventually. What we perhaps didn't appreciate at the time was that the cost would be much more than just the operation itself. Every PSA test cost us £175 I think, every 3 months for a few years, post-op physio was invoiced separately, £300 every time we see the consultant (and with a recurrence, J is still under the care of the urologist 12 years post-op), etc. 

I suppose what I am saying is that when you are weighing up your options, clarify what the implications might be later. 

I've sent you a DM Lyn but it won't send because your inbox is full apparently. Not sure if you're aware X

 
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