My Retzius sparing RARP + NeuroSAFE journey

User

Posted 23 Nov 2022 at 15:31

Wonderful news techGuy. Long may it continue.

User

Posted 23 Nov 2022 at 20:04

Brilliant news techguy 👍 so happy for you and long may it continue. Would love to be copying your post in a couple of years time 🤞🏼 Best wishes.

User

Posted 24 Nov 2022 at 00:45

👏👏👏

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

User

Posted 13 Dec 2023 at 12:15

Annual PSA blood test results:

<0.025 (using new Abbott Method from mid this year)

Happy days as still undetectable. 🤪😵‍💫🍾

Not the sensitivity scale has been changed. Seems to be across quite a few trusts if not nationally. Test sensitivity via my GP/hospital lab was <0.006 until July this year. Abbott Method sensitivity appears to be <0.025. All good…I guess less queries due to calibration error etc

Seasons best wishes all.

Edited by member 02 Dec 2024 at 11:32 | Reason: Not specified

User

Posted 13 Dec 2023 at 12:36

Long may it continue. All the best. 🥳👍

User

Posted 13 Dec 2023 at 14:56

Good result, may it remain so.

Interesting to note your trust changed its testing regime to be <0.025. I had this this summer it was initially a bit of a jolt to go from previously <0.006 to the new valuation point. After some investigation concluded a change in test minimum.

User

Posted 13 Dec 2023 at 15:07

Thanks!

yeah looks like the change was implemented effective from 24th July 2023. I guess maybe standardisation as I’ve heard a few friends who have had RARPs reporting the same. When the GP staff member initially said my value was 0.025 I did double take as was expecting around ~0.006. But with context all good 🤣🤪😵‍💫

User

Posted 14 Dec 2023 at 07:55

Good news TechGuy. !!! What a relief. very happy for you and wishing you Merry Christmas

User

Posted 02 Dec 2024 at 11:28

Annual PSA blood test results

<0.025 (Abbott Method)

Happy days as still undetectable. 🤪😵‍💫🍻

All the best for the festive season!

Edited by member 02 Dec 2024 at 11:31 | Reason: Not specified

User

Posted 02 Dec 2024 at 11:31

Great news. Long may it continue. 👍

User

Posted 18 Dec 2024 at 17:37

Originally Posted by: Online Community Member

All to common with PCa…if I had a quid for ever time I’ve been told this is the best cancer to have and very treatable..… 🤷🏼‍♂️😵‍💫🥶 Bottom line it’s still cancer and even at type 3+3 exhibits all the traits and can metastasise. Learning this on my own looking at various leading research papers make me act fast. The histology would say I’d made a timely decision 😵‍💫

Absolutely boils my p*** when I hear this from people! Like I should be over the moon that I have it… “That’s one of the good cancers to get” or “My dad had this and he was fine” - then you find out their dad was 85!

Well I’m 45, and am not overjoyed with the prospects of post-RARP side effects and neither is my wife!

I read on a cancer forum a post someone wrote about toxic-positivity following their diagnosis and it really captured the way I was feeling about how people had approached my diagnosis. I don’t want pity or to be molly coddled, but constantly being told ‘you’ll be fine’ trivialises it really.

User

Posted 18 Dec 2024 at 18:01

Hi RickandMorty.

The reaction of others to your diagnosis can be annoying. However, I think it's human nature to make light of it so as not to upset you.

I got sick and tired of people telling me how well I looked post op. When I actually felt shite and my head was a shed. I often felt like biting back and saying, "Do you realise I've not slept well for months. I'm still uncontrollably pissing myself and my cock is now as much use as a chocolate kettle"

But I didn't because I think they were just ill informed and doing their best to reassure me.

User

Posted 18 Dec 2024 at 18:22

At least you can eat a chocolate kettle!

A female "friend" of mine said how it was the best cancer to get while I was waiting for the RP that nearly killed me. Her husband now has it, I have resisted the urge to ask if she still thinks it's a good deal.

User

Posted 07 Apr 2025 at 17:30

Hi @Techguy ,

I have read your thread with interest and am glad that you have recovered well

I was diagnosed in March , G 3+4=7, T2aNOMO, PSA 4.3 , I am 56

my first thoughts were that no way was I having the prostatectomy and I was veering more towards HIFU but after looking at this it doesn’t seem to have the best long term success rates , another option is SABR which I am still looking at

your posts though have swayed me especially in regard to using best method and finding best surgeon, it seems though you can’t mention by name on here , I think I have narrowed it down to about 5 surgeons and I am thinking that yours is on there and also Jeremys

I can’t PM cause I’m new on here but wondered if you would mind PM to me to let me know ( if that’s allowed)

all the best

Nick

User

Posted 07 Apr 2025 at 17:57

Hi Nikko

sure will do

simon

User

Posted 07 Apr 2025 at 18:01

Well do

User

Posted 07 Apr 2025 at 18:13

Simon thanks so much mate, very kind for such a detailed response, still can’t PM but have read and understood and will certainly progress , fortunately I am in a position to take the private route

My shortlist was pretty good as in surgeons and am now more confident

thanks again and all the best

Nick 👍

User

Posted 07 Apr 2025 at 18:19

Cheers Niko

Should if you need anything more.

It really is a breeze. Just be mindful to take is easy and follow clinical instructions for the 3 months.....its flies by.

Keep us posted!

Cheers

Simon

User

Posted 07 Apr 2025 at 18:44

Thanks again Simon 👍

glad I came about your thread mate , some really inspiring stories on here 👍

User

Posted 07 Apr 2025 at 19:26

Pleased to hear it has helped. Its a hell of a roller coaster ride but hopefully this info will iron out some of the peaks and troughs :D

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