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

User

Posted 10 Nov 2021 at 15:11

Hello All,

I have decided on surgery, the Retzius Sparing Robotic Assisted Laparoscopic Prostatectomy, with NeuroSAFE.

I am scheduled to see Mr [Doctors name removed by moderator] in person in two weeks at UCLH for an initial discussion. Has anyone here undergone the same surgery by him at UCLH, if so I'd be very grateful for your thoughts/advice.

If definitely no go from Mr [Doctors name removed by moderator] for RS-RALP+NS on the NHS, I will see if either Prof Whocannotbenamedhere or Mr [Doctors name removed by moderator] can do it privately instead. Once again I'd be very grateful for your thoughts/advice.

Thanks and regards
ToyCollector

Edited by moderator 10 Nov 2021 at 22:01 | Reason: Doctors name removed

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 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 16:18

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

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User

Posted 10 Nov 2021 at 18:17

I had DC for that same op in June. Simply outstanding in my view. Wishing you the best of luck. Check out my main thread for info on the process.

User

Posted 10 Nov 2021 at 19:34

Hi Jeremys,

Thank you very much for kindly replying to my post. I will indeed check out your main thread.

Regards

ToyCollector

User

Posted 11 Nov 2021 at 08:37

I had a surgeon with the same initials as Jeremys, London based. I have to concur, outstanding and that was 8 years ago!

Flexi

User

Posted 11 Nov 2021 at 11:38

Hi flexi,

Thank you very much for kindly replying to my post. (As a newbie I'm not currently able to message others here privately)

This morning I spoke to your/Jeremys surgeon's secretary so if things don't work out for me with my originally assigned surgeon then I will ask to be referred across.

Can I please ask you and Jeremys:

1) Were your operations transperineal (from the back) or transpubic (from the front)?

2) Was NeuroSAFE used?

Thanks and regards

ToyCollector

User

Posted 11 Nov 2021 at 13:49

I had surgery by Professor Whocannotbenamedhere on the NHS three and a half years ago, and cannot recommend him highly enough, despite him and Da Vinci nicking 2” off my penis and leaving me impotent, yet cancer-free.

The most surprising thing was the almost painless surgery and its aftermath, and the almost instant continence once the supra-pubic catheter was removed.

A friend had an expensive prostatectomy by Mr DC, only to have recurrence months later, and subsequent adjuvant RT and HT, but he’s doing fine now, three years later.

NeuroSafe is more or less only available privately, although one or two NHS hospitals are toying with it.

Well worth the money to go private, in my opinion.

Best of luck.

Cheers, John.

User

Posted 11 Nov 2021 at 14:52

Hi John,

Thank you very much for kindly replying to my post. I am truly sorry to hear about your surgery side-effects, but at least you are now cancer-free.

With regards to your friend, again at least he is now ok.

All of us in the same horrible boat wish to make the best treatment decisions possible given our individual medical situations, hence my request here for info/opinions. I am thus immensely grateful to you, flexi and Jeremys for your informative replies.

Thanks and regards

ToyCollector

User

Posted 11 Nov 2021 at 15:22

Toycollector,

RALP was undertaken from the front I believe (I was asleep at the time!) and I don't believe the NeuroSAFE procedure was used (or available at the time).

Flexi

User

Posted 11 Nov 2021 at 16:10

Hi Flexi,

Once again, thank you very much for kindly answering my additional questions. I hope that all of your replies (and also those of Jeremys and John) are as useful to other nervous newbies here as they are to me.

Thanks and regards

ToyCollector

User

Posted 11 Nov 2021 at 17:36

I had an open nerve sparing RP by a leading guy based in the Midlands in March 2020.

Took several weeks to recover but life pretty mucjh back to normal 6 months later and certainly fully by a year

No after effects of any note ( apart from dry ejaculations )

User

Posted 11 Nov 2021 at 19:32

I had RARP from the front I believe ! thats where the holes were anyway so it must have been! I also requested Neurosafe although DC thought it was a bit of a gimmick-but he was happy to oblige. I thought why not the insurance is paying so go for the Rolls Royce.

Its still early days for me and whilst I have no issues at present having just read Flexis profile I am aware how complicated things can get post op if you are unlucky. I really pray i dont get a stricture. Not sure if there are any stats on % suffering post RARP stricture but I hope its very low.

Wishing you the best of luck

User

Posted 11 Nov 2021 at 19:39

Hi MikeW,

Thank you very much for kindly replying to my post.

The RP after-effect you mention is sadly a necessary one, but I am glad to hear that your surgery and recovery was otherwise so successful. Your reply (along with those of Jeremys, Flexi and John) has been very reassuring.

Thanks and regards

ToyCollector

User

Posted 11 Nov 2021 at 19:54

Hi Jeremys,

Once again, thank you very much for kindly answering my additional questions.

It's interesting to hear that Mr C thought that NeuroSAFE was something of a gimmick, but was nonetheless happy to oblige your request. That tells me that he is a reasonable person and a listening surgeon, another point in his favour.

I wasn't aware of the possibility of a post-op stricture. I have been trying to read up more about RP and what might happen afterwards, but I find myself becoming anxious and agitated, so I try to read/research in small digestible 'quanta'. I'll also take a look at Flexi's profile.

I wish you in return a full and speedy recovery.

Thanks and regards

ToyCollector

User

Posted 12 Nov 2021 at 08:01

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.

User

Posted 12 Nov 2021 at 09:22

You can be referred to any surgeon in the UK on the NHS if he is happy to take you on. Professor Whocannotbenamedhere told me since my surgery that he is no longer allowed to pick and choose his patients, and you might end up under the knife of one of his team.

This article from the Daily Mail may be of some help:

https://www.dailymail.co.uk/health/article-5808997/Meet-best-urologists-Britain.html

The Prof. said he wouldn’t send any friend or relative to any surgeon who does less than 100 prostatectomies a year. He himself does around 400.

Cheers, John.

User

Posted 12 Nov 2021 at 10:00

Robot A,

We’re based in the NW also but have been referred to London on NHS. Unfortunately just having to wait longer than we thought to get a date for op though

User

Posted 12 Nov 2021 at 10:14

Hi John,

"Professor Whocannotbenamedhere told me since my surgery that he is no longer allowed to pick and choose his patients, and you might end up under the knife of one of his team."

"The Prof. said he wouldn’t send any friend or relative to any surgeon who does less than 100 prostatectomies a year. He himself does around 400."

Thank you John, that is EXACTLY the sort of vital information all of us pre-treatment guys are looking out for. We all want to receive the most optimal treatment, and such information can be critical when talking to consultants and making our ultimate treatment choices.

I see that my original post was redacted: "Doctors name removed by moderator". I do understand that the mods have to be careful, but we here still want to know about others' treatment experiences. For the record I did NOT state anyone's name.

Thanks and regards

ToyCollector

User

Posted 12 Nov 2021 at 10:57

Originally Posted by: Online Community Member

Robot A,

We’re based in the NW also but have been referred to London on NHS. Unfortunately just having to wait longer than we thought to get a date for op though

Thanks Lorraine. Would love to send you a DM but it seems I can't because I am a new member. Would love to know why you opted for London rather than somewhere in the NW (eg Christies) for RARP

User

Posted 12 Nov 2021 at 10:58

Also, how long have you been waiting Elaine?

User

Posted 12 Nov 2021 at 11:00

Originally Posted by: Online Community Member

Hi John,

"Professor Whocannotbenamedhere told me since my surgery that he is no longer allowed to pick and choose his patients, and you might end up under the knife of one of his team."

"The Prof. said he wouldn’t send any friend or relative to any surgeon who does less than 100 prostatectomies a year. He himself does around 400."

Thank you John, that is EXACTLY the sort of vital information all of us pre-treatment guys are looking out for. We all want to receive the most optimal treatment, and such information can be critical when talking to consultants and making our ultimate treatment choices.

I see that my original post was redacted: "Doctors name removed by moderator". I do understand that the mods have to be careful, but we here still want to know about others' treatment experiences. For the record I did NOT state anyone's name.

Thanks and regards
ToyCollector

Completely agree Toy Collector. We are just all desperate for the best outcomes aren't we?

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