Retzius-Sparing Laparoscopic Radical Prostatectomy

Had my hospitial only done PSA testing to one decimal point I would have had 26 months of undetectable readings only then to be told my PSA was on the rise. That would have been like going through the initial diagnosis all over again. Following RT,  I again would be having undetectable PSA tests. Next PSA is tomorrow, so like way points on a map I will know what route i am taking.

My oncologist, who some of you know sees the fluctuations of a patient's PSA as a more of a problem, that of course assumes the fluctuation is the amount of PSA in the blood and not the machine.

 Thanks Chris

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Sorry - that isn't always clear to new members - it was a strategy introduced by Countryboy to stop the automated moderator removing bad words. Very useful sometimes. 

Other examples include kcuf / loblocks / tiwt / tishty 

I had my post-operative consultation with the esteemed Professor at the Royal Surrey County Hospital yesterday. He basically didn’t tell me anything I didn’t know, as I already had a copy of the histology report.

I mainly wanted to thank him for the brilliant surgery he carried out, and to tell him not to blame himself for the seven year gap in PSA tests leading to metastatic spread to my pelvic lymph nodes. That would be down to my GP.

Matron will admonish me for not being more proactive about my PSA testing, but naïve little me, when I dutifully trotted off to phlebotomy with my annual blood test form bearing the legend ‘FBC’ = Full Blood Count, every year for six years, I presumed that included a PSA test! How stupid can one get? It’s the National Health Service, not the Self-Help Health Service!

I must reiterate that since my raised PSA last November, and through the catalogue of tests, scans and ops, the NHS have been wonderful.

Good news anyway, both my post-operative PSA’s have been undetectable, <0.1, so nothing doing for the time being. I am as well as I was last year before diagnosis - I had no symptoms - apart from the little matter of very little matter left down below now......☹️

Of note: the Prof. said he's not a great fan of super-sensitive PSA assays, as they can be affected by ‘noise’ which can be a distraction.

I have been referred back to oncology, where in my newly acquired spirit of ‘self-help’, I will ask nicely for a Gallium PET-CT scan.

I asked the Prof. where in the world he would go if he ever required prostate surgery, Professor Bocciardi in Milan maybe, Professor Rha in Seoul?

He answered: Professor Haese at the Martini Klinik in Hamburg, who interestingly, don’t seem to mention Retzius-sparing surgery on their website.

https:www.martini-klinik.de/en/for-patients/

Edited by member 08 Aug 2018 at 12:23  | Reason: Not specified

You have said that a few times and it is undeserved - one of the things I feel most strongly about is the GMC's reluctance to take action against GPs who fail to follow NICE guidance in relation to PSA testing, cancer referral pathways and particularly, the 'Prostate Cancer diagnosis & management' and 'suspected cancer: recognition and referral' protocols. I have written to MPs, signed petitions, etc on exactly that point. 

If my mum hadn't had a dreadful GP, she might not have died at the age of 60. If the same GP had been more on the ball rather than an egomaniac more interested in his budget, my dad would have been diagnosed before his emergency admittance to A&E with acute retention and my recently dead step-mother might have been diagnosed with terminal lymphoma slightly earlier than 6 days before she died. We have thousands of great GPs (like mine) but the terrible ones should be struck off.

Franci, unless you have years and years of medical training & research behind you, I think you might eventually have to accept that the experts know more than you :-/ 

Matron, when I say “my GP” I refer to an ever-changing group of transient and part-time doctors who man “the biggest surgery in Coventry”, open just four and a half days a week. It is rare to see the same one twice, not that until recently I visited the surgery very often!

Appointments have to be booked by phone on the day, and any non-urgent appointments have gone by 8.40. On-line appointments are available occasionally, often three weeks hence.

I need to be grateful to the one GP who ticked the PSA box on the phlebotomy form last November for the first time in seven years, but I am still annoyed by the GP who dismissed my request for him to carry out a DRE whilst on his couch in my underpants for something else with the words that still ring in my ears: “We don’t do that these days”. He has retreated back to the sub-continent and beyond the reach of the BMA’s complaints procedure.

I think in reply to my first ever post you suggested I might ‘have an attitude’, and that is why.

I am completely chilled about having cancer, probably because there is nothing wrong with me......😉

Cheers, John

Edited by member 09 Aug 2018 at 15:46  | Reason: Not specified

Matron, what in the world is racist about stating where a Consultant hails from? The NHS would collapse without foreign doctors and nurses.

When I phoned up the hospital to speak to Dr K**n’s secretary, the operator said “Which Dr K**n do you mean? We have seven here!”

Calm down dear!

Cheers, John.

I believe you hail from Yorkshire but I don’t hold that against you. “My” Professor is slightly tanned, but I have never had an affable conversation long enough to discuss his ethnicity with him. He’s too busy curing people.

I have been to 105 countries and have loved them all and their inhabitants.......

Edited by member 07 Sep 2018 at 18:41  | Reason: Not specified

It’s fifteen weeks today since my prostatectomy, and I am as well as I have ever been, except for these little difficulties:

I have a slight dribble after each micturition, which is absorbed by my underpants and doesn’t show on my trousers, no pads required. I had an unexpected nocturnal emission (not of the kind enjoyed by teenage boys) about two weeks ago, but probably due to excess fluid consumption.

I have ended up with a micro-penis - and we have not had cold weather yet - which shows no sign of life other than as a flue for urine, daily Cialis has no effect. Going for the pump-action option!

PSA still undectable, but now seeking a second oncology opinion that may differ from the first one who told me “You are cured”, despite two lymph nodes being cancerous.

Anyway, no regrets, other than the seven year gap between PSA tests from 2010 till 2017. Did I mention that before? Sorry to be a bore. I’m not bitter!

Cheers, John.

Edited by member 25 Sep 2018 at 15:51  | Reason: Not specified

Her Loveliness, (my fiancée of 39 years) seems quite pleased, as she lost her libido three years ago after a total hysterectomy 😉

It was the top man at that hospital, and in my estimation one of the top urology Professors in the world, although I have only had experience of one!

It was not his fault that there was a seven-year gap between my normal PSA in 2010 and raised PSA last November that has lead to lymph node involvement. That would be down to my GP(s), and as Matron correctly points out, my lethargy and ignorance.

I could have paid around 25 grand to have everything done privately, but I had it all done on the NHS who have been brilliant throughout once I was diagnosed. I have now been referred on the NHS to the top oncologist at the Royal Marsden for a second opinion about the lymph spread, but for now, with undetectable PSA, I am enjoying being cured.

Sure, message me anytime. I am in touch with several of Professor X and his sidekick Da Vinci’s patients, past, current and potential.

Cheers, John.

Hi John.

Thanks for all the feedback on your Retzius Sparing experience. How are you doing now, some four months post-op? Having just been diagnosed and recommended for RALP, I am starting down the road of reading and studying.

Best regards,

Carl

 Franci, I would never wish it on him (or anyone else) in any way - that wasn’t what I said. Bollinge has posted already on his understanding that he is statistically likely to need SRT at some point; I was just reflecting that back to him. 

Hi Dumb,

Following discussion here about super-sensitive assay a couple of months ago, I ended up speaking to the bio-chemist at our billion-pound super hospital, who actually does the PSA blood tests. She said her machine only reads down to 0.1.

In view of what the Royal Marsden oncologist said I will look into having more accurate testing from time to time, even if I have to travel further afield. Not sure how it will be arranged as I seem to be advising my GP about PCa!

Interestingly, I had a note this morning from the Royal Marsden today asking me to participate in a trial of sadly not penile extension and erectile function improvement, but a survey of 25,000 to see if some men are predisposed genetically to suffer PCa. Of course I am happy to help, and in the first instance it only involves me sending them a saliva sample.

Then I realised that once they have my DNA then I might be linked to numerous cold-case rapes and murders but that that might be considered to be in bad taste to mention it here. And then I thought if it brings a smile to someone with PCa, let the sourpusses carry on scowling. The spittle is in the post!

Cheers, John.

Edited by member 02 Nov 2018 at 03:07  | Reason: Not specified

Good result matey! 

I know some medics do not advocate 'super sensitive ' PSA tests .. 
I personally prefer to have them....although I'm prepared to accept a fluctuation and slight variation at that level which can occur for a number of reasons ..not necessarily down to actual PSA rise,  but rather machine calibration / noise / variation  error etc... 

Best Wishes 
Luther