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Super sensitive PSA

User
Posted 24 Oct 2018 at 13:09

Hi


I had RP surgery in September 2015 and since then have been having routine Super Sensitive PSA tests ....all seemed to be going well at first with most results showing <.001, however in last 12 months I have had test results which seem to indicate a sustained, slightly elevated PSA ... I'm not talking of big numbers as test results have been <.007, <.003, <.006 and <.008, however this is starting to concern me.


Had discussion with my consultant yesterday and he says decisions are not made about further treatment (RT) until post-operative PSA reaches >0.2 and therefore we should continue to monitor PSA with a further test in 6 months time 


However, 6 months feels a long time to sit and wait for this to develop into something ...so....does anyone else have any experience of this test post RP operation?


 


Questions:


What are your experiences?


Am I getting stressed about this unnecessarily?


Are these tests reliable at such low levels of detection?


Anyone know how quickly this can develop to a decision point on further treatment? Months/years?


Whats the success rate for any post op RT treatment?


I'd appreciate input from anyone who is or has gone through similar


Regards


Phil


 

User
Posted 24 Oct 2018 at 17:09
It is indicative but since they will not consider that you have a biochemical recurrence until you either a) rach 0.2 or b) have 3 rises over 0.1 you are tormenting yourself about something you may have no control over. These are the thresholds determined by NICE.

Many hospitals have withdrawn the ultra-sensitive test due to unreliability but the steady rise that you are seeing is fairly classic for a few cells being left behind in the prostate bed. You also need to bear in mind that it could simply be a few healthy prostate cells regenerating.

If your GP is willing, you could ask for a PSA test in 3 months by which time it may be at or around 0.1 and by the time of the test 3 months after that you will be in a stronger position to ask for referral to an oncologist to discuss salvage RT/HT. Or you could phone the urologist's secretary now and ask to be referred to oncology - they are not obliged to agree to it if your CCG has decided on the 0.2 threshold as immovable but there is no harm in asking.

If you do eventually need salvage treatment, the outcomes are generally very good in cases where it is just stray cells in the prostate bed. My husband had results very similar to yours and finally had SRT when the PSA got to 0.16 which was about 2 years post-op. Seven years later he is still well and we assume the SRT was successful. You could also look at Ulsterman who was in a similar situation and his post SRT PSA stays around 0.06. If it does turn out that you have a biochemical recurrence, the oncologist will be able to use a nomogram to predict for you how likely it is that the salvage treatment is successful.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 24 Oct 2018 at 17:47
I have spoken to my own surgeon and an oncologist about what they call “super-sensitive assay” of PSA blood tests and they both said they cause more trouble than they are worth.

My hospital records <0.1 as ‘undetectable’ and that’s the lowest they go. And that’s me for now, <0.1, so I don’t have to worry about readings to the nth decimal place - ignorance is bliss!

There are fans of super-sensitive here, and no doubt they will pitch in with comments.

I have a consultation with possibly Britain’s most eminent prostate cancer oncologist next Tuesday, and I will ask his opinion. I’ll let you know what he says.

Cheers, John.
User
Posted 24 Oct 2018 at 18:52

Phil


After my prostatectom, my PSA was 0.014.  A year after, it had steadily risen to 0.023.  Upon the advice of my oncologist, I had a PSMA scan, for which I paid £2588.  It showed a small uptake in two lymph nodes.  I had salvage radiotherapy and I’m on hormone therapy.  My current PSA is less than 0.006.


I won’t offer any advice, but hope my situation gives you food for thought.


Ulsterman

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User
Posted 24 Oct 2018 at 17:09
It is indicative but since they will not consider that you have a biochemical recurrence until you either a) rach 0.2 or b) have 3 rises over 0.1 you are tormenting yourself about something you may have no control over. These are the thresholds determined by NICE.

Many hospitals have withdrawn the ultra-sensitive test due to unreliability but the steady rise that you are seeing is fairly classic for a few cells being left behind in the prostate bed. You also need to bear in mind that it could simply be a few healthy prostate cells regenerating.

If your GP is willing, you could ask for a PSA test in 3 months by which time it may be at or around 0.1 and by the time of the test 3 months after that you will be in a stronger position to ask for referral to an oncologist to discuss salvage RT/HT. Or you could phone the urologist's secretary now and ask to be referred to oncology - they are not obliged to agree to it if your CCG has decided on the 0.2 threshold as immovable but there is no harm in asking.

If you do eventually need salvage treatment, the outcomes are generally very good in cases where it is just stray cells in the prostate bed. My husband had results very similar to yours and finally had SRT when the PSA got to 0.16 which was about 2 years post-op. Seven years later he is still well and we assume the SRT was successful. You could also look at Ulsterman who was in a similar situation and his post SRT PSA stays around 0.06. If it does turn out that you have a biochemical recurrence, the oncologist will be able to use a nomogram to predict for you how likely it is that the salvage treatment is successful.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 24 Oct 2018 at 17:47
I have spoken to my own surgeon and an oncologist about what they call “super-sensitive assay” of PSA blood tests and they both said they cause more trouble than they are worth.

My hospital records <0.1 as ‘undetectable’ and that’s the lowest they go. And that’s me for now, <0.1, so I don’t have to worry about readings to the nth decimal place - ignorance is bliss!

There are fans of super-sensitive here, and no doubt they will pitch in with comments.

I have a consultation with possibly Britain’s most eminent prostate cancer oncologist next Tuesday, and I will ask his opinion. I’ll let you know what he says.

Cheers, John.
User
Posted 24 Oct 2018 at 18:52

Phil


After my prostatectom, my PSA was 0.014.  A year after, it had steadily risen to 0.023.  Upon the advice of my oncologist, I had a PSMA scan, for which I paid £2588.  It showed a small uptake in two lymph nodes.  I had salvage radiotherapy and I’m on hormone therapy.  My current PSA is less than 0.006.


I won’t offer any advice, but hope my situation gives you food for thought.


Ulsterman

User
Posted 24 Oct 2018 at 19:49
My story seems quite unique. I wish I could even consider numbers so immeasurable tbh , but understand any mens fears. My post op was 1.5 at eight weeks and 2.2 at twelve weeks and is now 38+. I’ve rejected RT as they say it won’t cure me. I tried one year of Bical HT which reduced the psa but at zero benefit to anybody. Im now 3 1/2 yrs post op and more or less total return to normal without all the radiation and QOL issues that people have who chase tiny tiny increases and forgo horrible treatments when in reality they may die of something else other than PCA before it spreads. I had G9T4N1MxR1 at the age of 48 and apart from knackered knees due to previous work I couldn’t feel better. I may be making a huge mistake , but despite 2 gold standard PET scans they can’t find a bl***dy thing. And I’m happy with that and normal life.

If life gives you lemons , then make lemonade
User
Posted 24 Oct 2018 at 20:41

Hi Phil,


The results won't be <0.007 it will be 0.007.  As one of your results went lower than before there isn't a definite trend yet although as it went from <0.001 it looks like something has happened as others have suggested.  The results are a lot lower than most people are aware of.  If it was doubling to say 0.014 it could be quite symbolic, yet even that is less than 10% of official recurrance.


It could be good to be aware as the trend can be symptomatic  and they could decide to treat you earlier especially if you are able to make your case. It sounds like the specialist isn't sympathetic.  On the other hand 0.03 seems to be a level below which there is usually little grounds for even thinking about future  intervention and some say tests should be a minimum of that level.  While others as high as 0.1.


Are you getting stressed unnecessarily?  I think I'd be concerned but I'd tell myself it isn't yet a true trend and it's rising slowly so could stabilise as others have or take a long while to get to the recurrance level.  Also with a slow rise it's more to be treatable with radiotherapy.  However like us all we live from test to test.

User
Posted 24 Oct 2018 at 21:40
Ah, well spotted - I had scanned quickly and missed both the < and the 3dp.

Phil, perhaps check & confirm your scores? If indeed your results are as posted and with the < then it is possible that your samples are being tested in different labs with different lower thresholds which makes it impossible to compare them. And at 0.00? this could definitely just be your body settling down - the average breast-feeding woman has a higher pSA than yours.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 25 Oct 2018 at 00:39
Gordon Bennet!!! They are all "less than" the only thing you can tell for certain is that the baseline sensitivity of the test is being messed about with.

Confirm the results are actually all "less than" and then forget about it until your next appointment.

Lyn must have scared you to death I can only assume she missed the "less than" and the 2 zero's.

I agreed with my consultant to do annual tests after my PSA "stabilised" at 0.023. Just coming up to 6 months and posts like this certainly rattle my confidence!

Ulstermans case is very unusual AND his final pathology indicated ART regardless because he never got a "less than". The chances of any scan picking anything up at 0.0 levels are pretty slim and he was very lucky to have found it - especially lucky as it changed his treatment plan.

Bollinge is also doing the right thing by getting a second opinion, an option you too can take but I suspect while you are getting less thans at supersensitive levels you will be wasting your time.



User
Posted 25 Oct 2018 at 10:55

Many thanks for all the quick and very comprehensive replies to my questions!!


It's really great to have access to such a knowledgeable and supportive community.


I'll read through the comments a few times and have a think before posting my thoughts, but once again ... many many thanks for being so helpful and responsive!


Phil

User
Posted 25 Oct 2018 at 11:02
I did a private test just before my declared biochemical failure.

My subsequent NHS test showed 0.2 whereas my private test showed 0.16.

The extra accuracy on my private test gave me the comfort of starting salvage treatment a little bit early.

Who knows, it could make all the difference.
User
Posted 08 Nov 2018 at 11:45

Bit of a shock today as PSA=.04 one year post-op, up from .01 four months ago. Have an appointment in a month with the nurse to see what it means. I'm worried as this seems to be two doublings of PSA in four months, ie doubling time two months. Any thoughts?

User
Posted 08 Nov 2018 at 11:59
@wicher ... are you getting retest to confirm?....assume this is super sensitive psa test as standard test reports at min 0.1 I think ...my consultant has said that the 'decision point' for PSA is 0.2 and my last test, although seemingly rising, was <.01, so some way to go before any intervention ... may be the same for you?
User
Posted 08 Nov 2018 at 12:31
I’ve just put a similar post on as my PSA has risen from 0.01 to 0.08 in6 months. This is following RP and ART in 2013. Not sure of next steps

Bri
User
Posted 08 Nov 2018 at 12:38
My local hospital only tests to 0.1, anything under that is classed as undetectable round here, and both my surgeon (in the ‘Top Ten’ in Britain, according to his peers and the Daily Mail) and my local oncologist, class any increase to under 0.1 as nothing to worry about. Any reading over 0.2 is classed as biochemical recurrence, or ‘The bugger is back’.

However, I did see a leading specialist prostate cancer oncologist last week who said that consecutive super-sensitive increases such as yours over several PSA tests may be a cause for concern. I guess the nurse will tell you something similar, like come back after a couple more PSA tests and take it from there.

Moreover, I did discuss with him what steps to take if there are consistent subsequent rises above 0.1 and up to 0.2, which in my case is essentially to do nothing, other than maybe have a Choline or PSMA scan, and basically avoid any salvage HT and RT as long as possible. Sounds like a plan.

Best of luck.

Cheers, John
User
Posted 08 Nov 2018 at 13:15
thanks for your comments John .... as always it seems we live from test to test
User
Posted 08 Nov 2018 at 13:36

My local hospital currently run PSA test results to 2 dec places .. 

I've been recorded as <0.01 since my surgery almost 4 1/2 years ago..

Recently my consultant has handed over my PSA monitoring to the specialist nurse team ( same hospital ) 
His instructions were, PSA tests every 6 months ....unless this patient's PSA rises to 0.2 or above ...I don't need to review him, unless of course he wishes to request a further consultation meantime.. ( the original letter stated 2 !! ) Obviously I challenged that and they admitted it was a typo lol!  
I'll be interested to see if my next PSA result is given to 1 dec place or 2 .. 
It looks to me that my consultant is not going to be interested in taking any further action unless I reach the NICE biochemical recurrence level of 0.2 
I'm not sure how I would feel about that if my PSA started to rise....but I think in my case I'd be inclined to avoid salvage RT for as long as possible..

Best Wishes
Luther

User
Posted 08 Nov 2018 at 14:06
I think you’re a lucky lad Luther, as there’s not long to go until five years when you are supposedly considered to be ‘in remission’, and long may it continue.

In my own case, about five months post-operative, I have put various simulations with different data into the American Sloan Kettering Nomogram prognostication calculator (which is the one they all seem to use - I thought the Royal Marsden would have developed their own Nomogram using NHS statistics, but apparently not), and it seems avoiding recurrence in the first twelve months is crucial. I’m trying my hardest!

Cheers, John.
User
Posted 08 Nov 2018 at 14:40

Originally Posted by: Online Community Member
I think you’re a lucky lad Luther, as there’s not long to go until five years when you are supposedly considered to be ‘in remission’, and long may it continue.

In my own case, about five months post-operative, I have put various simulations with different data into the American Sloan Kettering Nomogram prognostication calculator (which is the one they all seem to use - I thought the Royal Marsden would have developed their own Nomogram using NHS statistics, but apparently not), and it seems avoiding recurrence in the first twelve months is crucial. I’m trying my hardest!

Cheers, John.


Yes John,
Up to now I would consider myself to be a very lucky bloke! ........ although currently free of Pca ...I still leak! ... despite doing my PFE's as per instructions ....and choosing a very experienced surgeon who was the NICE lead for robotic training of fellow surgeons... 
He's had hundreds of 'dry' results...but even he couldn't guarantee I'd be dry post op... and the percentage quoted as 'dry' after surgery is a little exaggerated in my view as everyone I've met on my travels who have had surgery all admit to leaking to one degree or other.. If he's managed to get me free of Pca then I'll be happy!  
I'm not complaining.. as at present I'm managing the leaking without too much hassle and have declined an AUS procedure for the foreseeable future. 


I'll be monitored for 10 years I believe....I think that 10 years of stable 'undetectable' PSA  is the 'official' remission target?...although a recurrence can occur after that time scale.... 

Anyway, I don't want to hijack Phil's thread....but I sincerely hope you stay 'undetectable' and are 'cured' 

Best Wishes 
Luther

User
Posted 15 Nov 2018 at 12:16
I had a note back from the oncologist at the Royal Marsden saying my PSA on their testing was <0.04😁🍾which is the lowest their equipment goes down to. He suggested (in contrast with my surgeon and another oncologist) that I might benefit from sensitive tests that read lower than the minimum of <0.1 that my local billion-pound super-hospital tests to, should there be any hint of recurrence.

Members here mentioned other hospitals not too far away that do sensitive testing, but when I broached the subject with my GP yesterday, he said there is no mechanism to arrange blood tests elsewhere than at the local NHS hospital lab, with whom his practice has a contract.

“And anyway, I wouldn’t be able to get the results from anywhere else, and wouldn’t be able to pay them for the test.” Another example of joined-up thinking in the NHS?
 
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