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Retzius-Sparing Laparoscopic Radical Prostatectomy

User
Posted 29 Jul 2018 at 01:12

The retrospective study in the link is already 4 years old and was looking at the PSA scores of men that had the operation between 1993 and 2008. I think science has moved on since 2014 and interestingly, their conclusion seemed to be the opposite of what you are saying? In their report, men with detectable but stable PSA did just as well as those who stayed undetectable. Whether that is <0.1, <0.03 or <0.001 seems irrelevant to their findings. The researchers concluded that it was the unstable PSA with two succesive rises and / or a velocity of 0.05 or more that indicated risk which is not so far from the NICE threshold of 0.2 or three successive rises >0.1 since two successive rises of 0.05 brings the man over the 0.1 point anyway. 

That was what happened in J’s case, as it happens. The post-op PSA was something like 0.04 and dropped to 0.033 before rising to 0.068 and then 0.086 and 0.16 I think. Having the usPSA didn’t make any difference to the timing of the salvage RT; if he had been getting the results to 1dp he still would have been referred at the point when it reached 0.16 :-/

I guess usPSA is useful for men who like the extra worry; but it must be acknowledged that machine noise / tolerance range means that tiny fluctuations are not a cause for panic. It is the trend over a year or more that matters.

Edited by member 29 Jul 2018 at 01:21  | Reason: Not specified

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

User
Posted 29 Jul 2018 at 01:15
Made me laugh though - as far as I know, the George Eliot is a pub!!!!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 29 Jul 2018 at 01:27

Originally Posted by: Online Community Member

I mentioned that to the oncology nurse and he said they had tried it but it was not worth the trouble.

We have one of the newest and biggest hospitals in Britain here in Coventry, (PFI financed, probably costing over 1bn in the end). I called the biochemist there, because my first post-op PSA came up on my EMIS Patient Access app as 0.1! She said the result was

So then I phoned my GP and they said the result on their system was

I’m more than happy with <0.1 ‘undetectable’. We’ll see how long that lasts.

I liked the bit about the breast-feeding and recently orgasmic women’s PSA - not that I know anything about either!

 

MODERATORS - Something weird is going on. Part of Bollinge’s post has disappeared (his results of <0.1 and the biochemist and GP‘s explanations were there and now they are gone) and the middle section of my most recent post disappeared after posting. Gremlins? 

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

User
Posted 29 Jul 2018 at 11:35

Lynn

I guess my point is that if it's undetectable you don't know if it's stable or not. UPSA makes it detectable and hence can provide reassurance or evidence for further action later on..

If you find that beneficial or not depends on whether you like to have a plan or if you are happy to deal with stuff when it arises. 

There have been a few cases on here where guys have taken action based on staging AND UPSA and I suspect having the knowledge that they were not "undetectable" helped their decision.

If you are ever in Nuneaton I could meet you for a drink at the George Elliot 😊 They have a pub and a hospital with that name.. Like most NHS hospitals the GE can be excellent or crap (I have seen both over the last 20 years)  I am sure everyone there is working to reduce the examples of the later! 

 

I promise not to mention UPSA ever again!!

User
Posted 29 Jul 2018 at 11:53

Originally Posted by: Online Community Member

Lynn

I guess my point is that if it's undetectable you don't know if it's stable or not. UPSA makes it detectable and hence can provide reassurance or evidence for further action later on.

Where can I get UPSA blood tests done round here (Coventry/Brum)?

 

Cheers, John

User
Posted 29 Jul 2018 at 12:10

Francij1, please keep mentioning ultra sensitive testing.  It's an interesting topic and things change. 

Last time it was discussed I concluded <0.03 was a good compromise between reducing errors and providing a realistic starting point to determine velocity as early as sensible.  My hospital does <0.05 and my GP like others has a system that doesn't use the < sign which worried me the only time I had a test there.

User
Posted 29 Jul 2018 at 13:30

Originally Posted by: Online Community Member

Lynn

I guess my point is that if it's undetectable you don't know if it's stable or not. UPSA makes it detectable and hence can provide reassurance or evidence for further action later on.

If you find that beneficial or not depends on whether you like to have a plan or if you are happy to deal with stuff when it arises. 

There have been a few cases on here where guys have taken action based on staging AND UPSA and I suspect having the knowledge that they were not "undetectable" helped their decision.

{removed}

I promise not to mention UPSA ever again!!

 

Keep mentioning it - it is an interesting discussion - but it would be better if you could be factual rather than evangelical. The point is that the science is now clearly demonstrating that it is unreliable so some men have been caused undue distress and may have had unnecessary salvage or adjuvant treatment based on flawed results. It isn't the case that some hospitals are behind the times and not providing usPSA; in fact, what we are seeing is cancer centres of excellence withdrawing from usPSA testing. What concerns me more is that people read comments on sites like this, believe that their 0.05 result is a cause for concern rather than celebration and then become angry / frustrated when their urologist / oncologist explains they are undetectable and do not need further intervention. 

 

It is the same with LRP - there was a ground-swell of opinion that it was somehow going to be the gold standard for prostatectomy. Data has now shown that the outcomes are slightly worse than with open RP but slightly cheaper for the hospitals that already have the machinery in place and have already invested large sums of money in ensuring surgeons are trained to use it. The data is clear enough that hospitals who do not have the Da Vinci will not be investing in it in the future but still we have the evangelists who wish to ignore the facts and continue to tell everyone that LRP is 'best'. It isn't ... it is just more cost effective for the NHS and convenient for men who don't like the idea of being in hospital for a few extra days.

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

User
Posted 29 Jul 2018 at 16:06

Originally Posted by: Online Community Member

Originally Posted by: Online Community Member

Lynn

I guess my point is that if it's undetectable you don't know if it's stable or not. UPSA makes it detectable and hence can provide reassurance or evidence for further action later on.

Where can I get UPSA blood tests done round here (Coventry/Brum)?

 

Cheers, John

New Cross Hospital in Wolverhampton still do them. 

User
Posted 29 Jul 2018 at 16:51

Selecting lab equipment can't be that straightforward.  There are people such as Ulsterman who had early treatment after a sensitive PSA test.  Those hospitals buying equipment that only measures to 0.1 would be less capable of helping him.  Also you don't know what new thinking might emerge so you'd think hospitals would play safe and buy equipment that measures a lot lower, although I'd think it costs a lot more.  I'm happy with the 0.05 at Preston and was initially happy with 0.06 at Blackpool.  I was told by one doctor that testing to lower is better.

I've read things about velocity and time of first rise and to me they're reasons to want a lower PSA reading. Although I guess it would be possible to put up with not knowing as nothing will be done for most cases, and might actually be better not to know.  So I'm not full on with this but haven't been convinced 0.1 is good enough.

On LRP, I was offered Robotic and wanted it but it was at a more distant hospital, Blackburn, and thought the possible difference in outcome was insufficient.   The thought of being in hospital an extra 6 days for an open operation is very unattractive and there is more risk, especially to older men.  I was up and ready to go the day after the op and found it a total nightmare being in hospital for the 24hrs I was feeling alright.

User
Posted 29 Jul 2018 at 18:19
It isn't necessarily the equipment that's different - it is the level at which they are prepared to report it. Our hospital (a centre of excellence) has the equipment to test to 3dp (we had the results to 3dp for years) - it is that they have decided to stop testing down to that point. Spire, where J pays to see the uro, has also stopped providing results to 3dp. At first it was a worry, but you soon get used to seeing a score to 1dp with a little < next to it and feeling relieved. There may still be hospitals with old equipment that is only capable of testing to 1dp but I can't imagine it since usPSA has been around for about 20 years and my assumption is that the lab equipment would become obsolete far sooner but I will ask my pathologist friend.

In fact, LRP is more risky for older men than open is, since there is more pressure on the heart and a longer time under GA. The amount of time in hospital and longer recovery period does seem to be a persuasive factor for many.

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

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 p****d 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

http://community.prostatecanceruk.org/Scripts/tinymce/plugins/emoticons/img/smiley-foot-in-mouth.gifhttp://community.prostatecanceruk.org/Scripts/tinymce/plugins/emoticons/img/smiley-foot-in-mouth.gif

"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......☹️

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 moderator 12 Jul 2023 at 09:29  | 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

 
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