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48 y/o with Gleason 7 – need help in determining the right plan and advise

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User
Posted 17 Nov 2025 at 15:14

Hi everyone,

I’m Aman, 48, based in the UK. I’ve been reading a lot here and finally decided to post because I could really use some real-world wisdom.

My story:
Few weeks ago I got the news no one wants—prostate cancer—right as I’m also trying to start a new job. I’m doing my best to stay calm and make a sensible plan, but I’m a bit overwhelmed and would love to hear from people who’ve walked this path.

Diagnosis details:

  • PSA: 34 ng/mL

  • MRI: PI-RADS 4 (prostate ~23 cc)

  • Biopsy (transperineal):

    • Right posterior Gleason 4+3=7 (GG3)

    • Right anterior Gleason 3+4=7 (GG2)

    • Left anterior Gleason 3+3=6 (GG1)

    • Left posterior benign

  • Bone scan: clear/negative

  • NHS centre: Royal Berkshire Hospital (Reading)

  • 2nd opinion referral: UCLH (London)

What I’ve been told so far:

  • My NHS urologist recommends radical prostatectomy.

  • I asked for a second opinion on focal therapy (HIFU or NanoKnife).

  • I self-funded a private consult today: they ruled out focal therapy for my case and recommended robotic radical prostatectomy using:

    • Retzius-sparing approach

    • the surgeon’s continence-preserving “cuff” technique

    • NeuroSAFE (intra-op frozen section to guide safe nerve-sparing)

What I’m hoping to learn from you:

  1. Has anyone had Retzius-sparing robotic prostatectomy with NeuroSAFE on the NHS?

    • Which hospital and surgeon?

    • Was it offered as standard practice or only via a specific programme/trial?

  2. Recovery experiences:

    • How quickly did you become pad-free?

    • If you had NeuroSAFE, did it help with nerve preservation and erections in real life?

  3. Practical stuff:

    • Waiting times from listing to surgery on the NHS?

    • Tips for getting seen sooner (cancellation lists, being flexible, alternative centres)?

I don’t have private medical insurance, so I’m trying to find the best NHS route with the gentlest recovery I can. Any pointers—names of surgeons/centres, honest outcomes, logistics—would mean a lot. Feel free to DM if you prefer.

Thanks for reading and for any guidance you can share. It really helps to hear from people who’ve been there.

— Aman 🙏

User
Posted 17 Nov 2025 at 20:22

Hi Aman

I’ve had the the procedure privately. The UCLH guys are at the top of their game. That would definitely be on the top of my list. If at all possible ensure your surgeon has evidence based high volume stats and a reputable track record…..it makes a difference.

Many thanks to Adrian as he posted a link to my journey. Shout if you have any questions etc 

Best 

Simon

Edited by member 17 Nov 2025 at 20:34  | Reason: Not specified

User
Posted 17 Nov 2025 at 15:57

Hi, Aman.

I'm sorry that you've had to join us, but welcome to the forum mate.

Your private consultation describes the 'Rolls-Royce' of RARP. Retzius sparing, neuro-safe and CUP (complete urethal preservation)

I started a conversation on CUP. I thought it was still being trialled?

https://community.prostatecanceruk.org/posts/t31994-CUP--Complete-urethral-preservation.

There are a few on here who've had Retzius sparing, neuroSAFE, RARP

https://community.prostatecanceruk.org/posts/t22898-My-Retzius-sparing-RARP--NeuroSAFE-journey

Most of these 'extras' will be provided by highly skilled and very experienced surgeons. I'm not sure whether you'll manage to get the complete 'luxury package' on the NHS.

To me, what you are seeking, is what every man should get when chosing RARP, but very few do.

Good luck, mate.👍

Edited by member 17 Nov 2025 at 17:03  | Reason: Add link

User
Posted 17 Nov 2025 at 22:43

Thanks so much for the welcome — and for those links, Adrian. Really helpful.

Since you mention CUP to still being in trials, I will find more about it. I have another appointment later this week with UCLH so will find out.

User
Posted 17 Nov 2025 at 22:47

Thanks Simon for the tips. Really appreciate it.

I went through your journey and it gave me a real insight on what to expect and how you went about it. It's really inspiring. Will get in touch once I have had my meeting with UCLH.

Cheers

Aman

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User
Posted 17 Nov 2025 at 15:57

Hi, Aman.

I'm sorry that you've had to join us, but welcome to the forum mate.

Your private consultation describes the 'Rolls-Royce' of RARP. Retzius sparing, neuro-safe and CUP (complete urethal preservation)

I started a conversation on CUP. I thought it was still being trialled?

https://community.prostatecanceruk.org/posts/t31994-CUP--Complete-urethral-preservation.

There are a few on here who've had Retzius sparing, neuroSAFE, RARP

https://community.prostatecanceruk.org/posts/t22898-My-Retzius-sparing-RARP--NeuroSAFE-journey

Most of these 'extras' will be provided by highly skilled and very experienced surgeons. I'm not sure whether you'll manage to get the complete 'luxury package' on the NHS.

To me, what you are seeking, is what every man should get when chosing RARP, but very few do.

Good luck, mate.👍

Edited by member 17 Nov 2025 at 17:03  | Reason: Add link

User
Posted 17 Nov 2025 at 20:22

Hi Aman

I’ve had the the procedure privately. The UCLH guys are at the top of their game. That would definitely be on the top of my list. If at all possible ensure your surgeon has evidence based high volume stats and a reputable track record…..it makes a difference.

Many thanks to Adrian as he posted a link to my journey. Shout if you have any questions etc 

Best 

Simon

Edited by member 17 Nov 2025 at 20:34  | Reason: Not specified

User
Posted 17 Nov 2025 at 22:43

Thanks so much for the welcome — and for those links, Adrian. Really helpful.

Since you mention CUP to still being in trials, I will find more about it. I have another appointment later this week with UCLH so will find out.

User
Posted 17 Nov 2025 at 22:47

Thanks Simon for the tips. Really appreciate it.

I went through your journey and it gave me a real insight on what to expect and how you went about it. It's really inspiring. Will get in touch once I have had my meeting with UCLH.

Cheers

Aman

User
Posted 18 Nov 2025 at 07:17

AMank, there is a guy at Nottingham city hospital who does the Retzius technique on the NHS, not sure how easy it is to transfer out of area for surgery. 

Thanks Chris.

User
Posted 18 Nov 2025 at 19:32

Hi Aman

i had single port Neurosafe nerve sparing ( not retzius sparing ) in August at London Bridge Hospital , you can’t name surgeons on here but mine was/is well regarded with great track record , if you look into Royal Marsden urologists you will see him

i had catheter in for 11 days and was dry upon its removal, ED is also looking promising 

This was done privately though 

good luck with it all mate

Nick

 
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