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Retzius-Sparing Laparoscopic Radical Prostatectomy

User
Posted 29 Jul 2018 at 18:52

I was happy with my ‘undetectable’ reading, and long may they continue - I’m not holding my breath! But it would be nice to know the ‘true” reading, so as to observe any increase, if it is not a too great a demand on the NHS.

I’m not a fan of hospitals, least of all Wal’s Grave, the Super-Hospital in Coventry, where there a lot of sick people (and the clue is in the name) Auld Codger, but I hope to get referred simultaneously back there and to Warwick as well, so I can have a second opinion right away. They say the optimum time for an encounter with a ray-gun is seven months after surgery.

I noted your ‘tish’ comment, Matron, and although I consider myself fluent in English I had to look it up - it means something to do with a Jewish repast on the Sabbath! Fortunately the on-line dictionary I used also had an anagram facility which lead me to your true meaning. I also cracked Codger’s cryptic clue about cutting off my nose to spite my face. Perhaps I ought to start doing the Telegraph crossword, so as to understand future posts here.

Open surgery? For me it’s an open and shut no-no where there are minimally invasive alternatives.

Cheers, John

Edited by member 29 Jul 2018 at 18:53  | Reason: Not specified

User
Posted 29 Jul 2018 at 23:21

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

User
Posted 30 Jul 2018 at 00:47
Re PSA tedting can vouch from personal experience that the same machines are used. I had the op on the NHS but because I now live in Wales they would fund he op but not the follow up so I paid privately so I could have some consistency in the follow up. The Nuffield hospital I attend used to do a great service where you would turn up, have the test then see the consultant for the result all to 3dp's.

Unfortunately 6 months ago I went in for the result and the consultant said "Less than 0.1 but detectable". Well I needless to say I was pretty Pissed and so it turned out was he! He immediately went and saw the lab person and was able to wring a score out of him of 0.026 but was told they could no longer quote numbers below 0.1 because they were no longer certified even though the machines etc had not changed! To be certain the doc sent the same blood to a clinic in London and it came back 0.03 - arrgggh the same value I had just read was being considered as a candidate for biochemical recurrence!!! So six months later and back at New Cross where they still test to 0.001 I get a value of 0.023.

So Lynn is correct I should probably have taken the 0.1 route from day 1 with a G3+3 T3A that was very focal and had "just skimmed" the capsule. This would have saved me all this PSA anxiety BUT you know what I am glad I do USPSA because knowledge is power - you just have to remember it's probably only he 2nd decimal place you can rely on!!

For higher Gleaston and even more extensive spread after RP I think USPSA is essential especially if you are hoping to avoid the "ray gun"

Whoops you did say I could keep talking about it!!

User
Posted 30 Jul 2018 at 01:23

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

User
Posted 30 Jul 2018 at 01:38
John once had two samples taken on the same day and sent to different labs (one at the GP practice and the other at the hospital about an hour later) - the results came back as 0.068 and 0.10 but that was in 2011 and the GP sample was tested at Harrogate infirmary (apparently they were slightly cheaper than Leeds). When we queried it with the uro he said that everyone knew the Harrogate lab results come out higher than everywhere else and it was taken into account when accepting referrals from N Yorks men.

Then in 2015, dad had one sample split and tested twice at the same lab; the results were 0.30 and 0.32 which the uro said was a perfect example of machine noise / tolerance.

What can we do, faced with that kind of imprecision?

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

User
Posted 30 Jul 2018 at 01:42

Originally Posted by: Online Community Member

I noted your ‘tish’ comment and although I consider myself fluent in English I had to look it up 

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 

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

User
Posted 30 Jul 2018 at 01:45

Originally Posted by: Online Community Member

Other examples include / tiwt /

/ WTF /?

User
Posted 08 Aug 2018 at 12:10

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......☚ī¸

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

User
Posted 08 Aug 2018 at 13:03

Well as you might expect I am happy to disagree with the professor on the value of super sensitive testing especially in your case.
A supersensitive test now will provide you with a significant baseline and could mean further treatment is unnecessary.

So let's say you have the super sensitive test and it comes back as less than 0.001. That would be a pretty significant indication that your RP got everything including the lymph spread. This is backed up by clinical research that says anything less than 0.003 can be pretty certain there is full remission:
https://www.hopkinsmedicine.org/brady-urology-institute/specialties/conditions-and-treatments/prostate-cancer/prostate-cancer-questions/psa-how-low-should-it-go

Even if it comes back as 0.02 or something else less than 0.1 and you take the option of ajuvant RT how will you know in 18 months time if the RT has had any impact? Without a super sensitive test you will be in the dark.

Now being in the dark may be your preference but as you have found previously being in the dark is only beneficial until someone or something turns the light on!!

Edited by member 08 Aug 2018 at 14:02  | Reason: Not specified

User
Posted 08 Aug 2018 at 13:32

Originally Posted by: Online Community Member

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! 

 

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 :-/ 

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

User
Posted 08 Aug 2018 at 14:01

 

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 :-/ 

 

Mm that's why I always try and incudes current research or statements from leading institutions in my comments.

Your own quote is interesting re GP'S  consultants can be be just as crap, the medical world is full of ego maniacs !

User
Posted 08 Aug 2018 at 14:04

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

 
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