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User
Posted 30 Dec 2020 at 13:14
One week post surgery and feeing a bit more normal, pain killers much reduced now but odd twinges from places I haven’t had aches from before. Have modified catheter straps so they work now with old belt, whoever designed this abomination didn’t have to use it I suspect and didn’t understand gravity?

Is there a good primer on post-op PSA please?

From what I understand, “Zero isn’t Zero”, it depends on where you are in the country how it is measured and how remission is defined?

Some Cancer cells produce more PSA than others...?

So one residual cell site of a high PSA form may produce more PSA than 100’s of cells in many locations of a different type of Cancer cell? So one patient may trigger further treatment with a single site in the prostate bed, where another may have a wider issue with more sites?

A PSA of 0.1 is a statistical inevitability with measurements of any scale, it is effectively a measurement of uncertainty and not any form of accurate measurement in any system ( ie it’s generally in the uncertainty/noise of the equipment you are using) True one NHS trust can tell you you have a PSA of 0.01 ng/ml and not 0.1 but the treatment threshold is the same? 0.1ng/ml?

The high sensitivity measurements stated by some appear of dubious value it seems and give no better information, other than it’s going up towards the point where you will need treatment; another patient won’t know until their PSA is 0.2. Not very good is it?

Is PSA a good enough measurement post OP to define a treatment threshold, and is there any other way of detecting residual prostate cancer cells ?

Buzzy

User
Posted 30 Dec 2020 at 15:42

Thanks to all for the moral support it has really helped me not feel that I am on my own with this F’ing thing.

Have a Good new year.

Buzzy

 

User
Posted 30 Dec 2020 at 17:26

Hi Buzzy,

I haven't seen a good primer on PSA - it can be quite complicated.

“Zero isn’t Zero” - there are two aspects of this, the lowest that any test can measure, and that there are other sources of PSA in the body, albeit tiny, be even women have measurable PSA levels on the most sensitive tests. You'll see references to "undetectable" but I consider this term useless, because what's detectable on one tester won't be on another using a different model or assay, so undetectable has no uniform meaning. Each tester/assay has a minimum value it can measure. Some common ones are:
0.1
0.01
0.003
If you are below the minimum for that tester/assay combination, you will be given <0.1, <0.01, or <0.003 (for the three examples above).

The lab at my local hospital measures down to 0.01.
The lab at my radiotherapy hospital measures down to 0.1, but that's not good enough for prostatectomy patients and their samples have to be sent to one of the central London hospitals which does down to 0.003 although 0.01 is regarded as good enough in this case.
Another hospital linked with a support group I run does prostatectomy patients down to 0.003, and all others down to 0.1.

Different cancer cell mutations produce different amounts of excess PSA. You might get a rough idea in your case from what your initial PSA at diagnosis was, and the extent of the cancer. If you've had prostate cancer a long time, you will probably have multiple different mutations among the cancer cells, and their PSA levels may be different. About 15% of prostate cancers don't produce any extra PSA, and those can be more difficult to pick up in the early stages.

What tends to be more useful is to look at the rate of change of PSA than the absolute numbers, when monitoring for progression. You're looking for stable numbers, rather than increasing numbers, but to be low is good too.

For protatectomy, ideally your surgeon will want you to be well below 0.1. Three consecutive increases above 0.1 or hitting 0.2 are the usual triggers for further investigation, although the investigation doesn't necessarily happen at that point - often they need higher levels to initiate some types of investigation.

However, this isn't driven entirely by PSA. Histology factors in too. Sometimes they will know from the histology they left some behind, and if this is cancerous and aggressive, they may initiate further treatment sooner. Sometimes some prostate cells are left which are not thought to be cancerous (nerve sparing can do this), and these will give a higher background PSA level, but that is expected to remain stable and not increase.

The high accuracy PSA measurements can cause patient anxiety when the least significant digit bounces around, but an oncologist will understand this. These can be very useful when working out things like doubling times. One prostatectomy patient I spoke with who was being incorrectly given the low accuracy ones when his PSA was rising meant they couldn't immediately work out his double rate, which would normally have been important in selecting followup treatment. This was regarded as a medical mistake.

PSA is a much better tool for monitoring treatments than it is for initial diagnosis. It was indeed originally used for this, before anyone started using it for initial screening.

Wishing you the best result and all the best for 2021.

User
Posted 30 Dec 2020 at 19:01

Originally Posted by: Online Community Member
The lab at my radiotherapy hospital measures down to 0.1, but that's not good enough for prostatectomy patients and their samples have to be sent to one of the central London hospitals which does down to 0.003 although 0.01 is regarded as good enough in this case.

 

I am not sure whether it is just the way this bit has been worded but I disagree a little with what you have written here Andy. Who says that 0.1 isn't good enough? The decision was made at the national uro-oncology conference about three years ago that ultra-sensitive PSA testing was unreliable and that testing to 2dp or less was not recommended. As a result, a significant proportion of hospitals around the country changed their policy - including in the area where I live, a teaching hospital and one of the leading uro-oncology centres in the country. Spire and Nuffield in our area have also  withdrawn PSA testing to more than 1 dp. This means that for 8 of the nearly 11 years, John was getting his PSA reading to 2 or 3 places but for the last couple of years has only been able to get a 0.1 / <0.1 / 0.11 result. 

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

User
Posted 30 Dec 2020 at 19:04

Buzzy 

My post op letter said if my PSA broke the threshold of 0.1 I would be referred back to the consultant. This just meant I came back under the radar and PSA tests remained at three month intervals. The trigger for treatment options is generally 0.2 which can be considered to be BCR. Salvage treatment for me started at around 0.27. Your post op histology will also have a bearing on your post op outlook.  My hospital tests down to at least 0.03 and my consultant automatically retests any post op figure above 0.09. 

Having a more sensitive test meant I knew where I was heading at an early stage, and recurrence was not a surprise.

I visited the Christie in Manchester for some follow up treatment and only got one decimal point results. I would be interested to know what sensitivity post surgery patients get. A consultant there said he preferred a two decimal point test.

Stay positive, next hurdle will be your TWOC.

Thanks Chris

 

 

User
Posted 30 Dec 2020 at 20:16

Originally Posted by: Online Community Member
I am not sure whether it is just the way this bit has been worded but I disagree a little with what you have written here Andy. Who says that 0.1 isn't good enough?

All the consultants I work with (mostly urologists), plus my own oncologist.

If you don't have 2dp, you can't detect 3 consecutive rises between 0.1 and 0.2, one of the main criteria for biochemical recurrence.

The case of someone I was counseling, who went 0.1 to 0.2. The consultants couldn't tell if he'd gone
0.10
0.15
0.20
or
0.18
0.19
0.20

These two would have different treatment paths. It was immediately admitted he'd been accidentally given the wrong PSA tests for someone who'd had a prostatectomy (given the establishment had both available).

2dp is not required for radiotherapy patients.

Edited by member 30 Dec 2020 at 20:17  | Reason: Not specified

User
Posted 30 Dec 2020 at 20:24

I think this is just a simple misunderstanding then - there is no concern about the reliability of 2 decimal place readings above 0.1 - only below 0.1 has been discredited.

 

Above 0.1, two dp may also be useful for anyone on AS and is pretty important to anyone that has had salvage RT and is holding their breath. I rarely seen it used above 10 but Stan's PSA results were recorded as 17.8, 18.5, 22.5, etc while he was supposedly on AS (the only bit they did right, as it turned out 😥) 

Edited by member 30 Dec 2020 at 20:41  | Reason: Not specified

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

User
Posted 30 Dec 2020 at 23:10

Hi All, thank you.

In engineering even on logarithmic scales 0.1 “anything” is pretty meaningless as a measurement other than an indication, as measurement error and calibration errors in equipment are round up or down according to the manufacturer preference and user error. So 0.1 +/- 0.05 could actually be 0.51 rounded up or 0.149 rounded down.

Two patients to 1dp would both be presented as 0.1 by most labs as no change and still not trigger more treatment. None of the measurements presented anywhere state the measurement tolerance? +/- ? And reference to what level that is NOT zero?

As Andy points out it’s the trend that is important, and if this is the case than this needs to be a LOG scale measurement not a simple linear scale?

But If it’s the doubling of PSA that is important then a rise of 0.1 is important but if the previous level was 0.05 and the next as 0.1; how is anyone supposed to discern this has doubled if the measurement accuracy presented is 0.1 +/- 0.1 ? The same for goes for 0.1/0.2..

Using an engineering analogy by the time this moves to 0.2 from 0.01 (absolute) this is a log increase of over 12dB and has doubled four times before detection.

( Simply :- a doubling is 3dB on a scientific logarithmic scale widely used in science, there are various scales but all have a reference value that deliberately is NOT zero) A far more sensitive way of expressing meaningful doubling rates etc.

So from what very little I understand... is....

Because no one has a better measurement of post operative Cancer status, the PSA level is being used.

As a result the PSA measurement may actually be unable to actually detect single incremental changes or trends because it is unknown what anyone’s “Safe non threatening Background” PSA level is, and that it may naturally vary?

Because some Labs think they can measure PSA to 3dp they make the number important and not the relation to the previous measurement?

This infers some treatments are given that maybe unnecessary, and others are delayed due to measurement of an absolute number, with no available patient reference level(?) Rather than a trend that is obscured because not everyone is using the same scale or measurement accuracy/assay?

So if you have one instance of some slow growing PC cells producing lots of PSA you may get further treatment, before someone with multiple instances of low PSA emitting PC clusters and be in more need.

Is there no better way!?

On another topic how do you know PC has spread to your bones?

Buzzy

 

 

Edited by member 30 Dec 2020 at 23:16  | Reason: Not specified

User
Posted 30 Dec 2020 at 23:46
Sort of, except doubling time is also only reliable above 0.1. What can't be predicted pre-op is how much 'healthy' PSA your body will produce without a prostate.

John's PSA post op was 0.033, then 0.06 then 0.08 so it was obvious which way it was going (although there was then a drop back to 0.06) but we didn't go for salvage RT until there had been 3 rises above 0.1

Oncos and uros should have a good grasp of the tolerance range at their local lab and allow for this in their deliberations. For example, it is well known among medics in our area that the Harrogate infirmary lab tests higher than the Leeds THT lab; we have tested that out and the difference was 0.32 and 0.30 (one blood sample, two labs). John also had two blood samples drawn 1/2 hour apart tested at the same lab with two different results (0.1 and 0.086).

Oncos shouldn't take only PSA into account although my observation from here is that uros do rather too often (and not in a good way - some seem a bit too reluctant to acknowledge that the op may have been unsuccessful IMO) - there is also a wealth of data in the post-OP pathology to take into account. So Ulsterman had a post-OP PSA of 0.03 but poor pathology - he was referred for scans which identified active cancer in a lymph node. It was the pathology that made the PSA number significant.

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

User
Posted 30 Dec 2020 at 23:49
"This infers some treatments are given that maybe unnecessary, and others are delayed due to measurement of an absolute number, with no available patient reference level(?) Rather than a trend that is obscured because not everyone is using the same scale or measurement accuracy/assay?"

Unlikely because the universal threshold is still 0.2 OR three successive rises above 0.1 OR evidence of biochemical recurrence (from a PET scan, etc)

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

User
Posted 30 Dec 2020 at 23:56
"So if you have one instance of some slow growing PC cells producing lots of PSA you may get further treatment, before someone with multiple instances of low PSA emitting PC clusters and be in more need."

In practice, highly unlikely as the vast majority of PCas are adenocarcinoma and years of data have made the behaviour of adeno PSA quite predictable. The scenario you suggest might theoretically occur if the man has a non- or low-secreting PCa such as small cell but in reality, that would have been identified in the post-op pathology.

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

User
Posted 31 Dec 2020 at 00:12

"On another topic how do you know PC has spread to your bones?"

 

From a bone scan if the metastatic clusters are large enough to see; with micromets, there is no way of knowing until the PSA starts climbing. 

 

In reality, the surgeon triangulates the 6 week post-op PSA with the pathology results and then the subsequent PSA tests in order to predict the likelihood that the op was successful. They have many years of data to rely upon:-

- a post-op PSA of less than 0.1 with negative margins and adenocarcinoma and no perineural invasion indicates a likely success - if the PSA remains <0.1 for at least 5 years, even better

- a post-op PSA of 0.2 is bad news; indicates that the PCa had already metastasised before the op

- a PSA that falls to <0.1 immediately post-op and then climbs steadily over a period of time indicates that some cancer cells have been left in the prostate bed; this is often also indicated in the pathology. Salvage RT is usually considered in this case and only if that is unsuccessful would they conclude that the mets were further afield

- with a post-op pathology reporting positive margins, PNI and / or a rare type, a wise surgeon may not wait for the PSA to go above 0.1 before referral to oncology

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

User
Posted 31 Dec 2020 at 00:16

Hi,

er still compiling TLA,s....

TWOC?

Thanks

 Buzzy

User
Posted 31 Dec 2020 at 00:41

Thanks Lyn,

The conversations with both consultants were non committal  about success of removing absolutely everything, due to invasion of seminal LHS vesticle. The comment from one post-op about the OP being difficult also re-enforced this so I suspect issues will arise due to the PSA of 24.1 pre-op, hopefully not....But hope hasn’t worked this year..

Currently unaware of what they will be looking for post op with pathology, and although a negative margin is something I am aware of the proximity to other parts is concerning.

I have two deep aches sans derrière that I will mention at the next meeting, this maybe just pressure sores due to lack of activity currently ( and not wanting wounds to bleed again) and although have been scanned have my doubts about that process too! (As attending nurse/operative could in no way explains the image I watched while the body scan was being carried out)

I am grateful for the dialogue, as I have not had that much actual talk time with anyone and it is beyond surreal!

We bought a car recently, and spent more time buying that than I have actual clinic time with consultants/doctors with this F’ing thing!

Hope you and yours have a non PC new year!

Buzzy

 

User
Posted 31 Dec 2020 at 01:48

Originally Posted by: Online Community Member

Hi,

er still compiling TLA,s....

TWOC?

Thanks

 Buzzy

Trial WithOut Catheter.   i. e. the district nurse comes around and removes catheter and you see if you can pee; if not, you have failed and they give you another catheter. I have some experience of intermittent self catheterization, but that is a longer story than you need to hear at the moment.

BTW, in the criminal justice system TWOC = taking without consent, which is short hand for stealing a car usually for a joy ride.

BTW, TWOC is a FLA not a TLA. 

BTW, BTW is a TLA. 

Dave

User
Posted 31 Dec 2020 at 07:59

Ahh...Err....Ughh!

☹️

TTFN

 

User
Posted 31 Dec 2020 at 09:04
You are over- fixated on the significance of your previous PSA of 24 which I think in your mind is worryingly high.

The PSA scale just on this forum at diagnosis has been 0.5 to 13,000 ... the highest PSA our urologist has ever seen is 160,000! We have had men on here with PSA of 60, 80 or higher and no cancer - we have seen men with PSA of 80 or more have successful radical treatment.

It isn't your PSA that is the main concern; you have had surgery knowing that you were a T3b and that neither of the consultants you spoke to could say with conviction that the op will be successful.

What should you be hoping for in 5-7 weeks' time?

- PSA <0.1

- negative margins

- adenocarcinoma

- no evidence of extra-prostatic involvement apart from the already identified seminal vesicles

You will also want to know whether they were able to save any of the nerve bundles.

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

User
Posted 31 Dec 2020 at 11:21

Lyn,

Thank you, that’s what I have been trying to figure out, how to measure the next bit against the previous bit (Surgery). I.e the success of the choice I made.

The PSA for me has been a worry as throughout both doctors, three consultants and the nurses I have spoken to have all said it was “Very High” in a way I have interpreted as “Oh really THAT high...oh dear....” one nurse even said that it was “unusually high, double the level we normally operate on”... hence the trepidation... and most cases on the forums are below 10 ish and are having the operation at that level.

This is still so new and I haven’t really had many meaningful conversations with the clinic as everything is so rushed and COVID safe. Didn’t really get a proper look at the imagery either.

What role does Testosterone play in all this? Is it bad to have too much, and why isn’t it measured at the same time as the PSA if it is? Is it best to vigorously exercise causing the generation of more, or be sedate?

Have a good new year, and very much thanks for the knowledge, sorry you know this stuff.

Buzzy

Edited by member 31 Dec 2020 at 11:22  | Reason: Not specified

User
Posted 31 Dec 2020 at 11:31
It may be true that at your hospital, they generally only offer surgery to men with a PSA lower than yours, but it will also be true (nationally) that a man with T3b is often considered unsuitable for surgery (which is one of the points Andy made above - why did the MDT recommend surgery in your case?).

I think from watching posts on here that it has been much harder for men to be diagnosed during a pandemic in some areas.

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

User
Posted 31 Dec 2020 at 13:35

The consultations I had suggested that the type and position of my infestation it would have been unwise to leave it in-situ. The conversation around RT was that the MDT recommendation was surgery, and if required RT.

Luckily or un-luckily the whole pace of the diagnosis and treatment timeline was determining the course, and I thought I had enough information to trust the judgement of “My” medical advisors; compared to whome I knew doddle-squat about the subject.

One conversation suggested RT alone would not shift what I had due to the proximity of other anatomy, and removal would spare duress on those parts if RT was needed. In short the get it out and deal with the consequences option was time related and if I delayed that would no longer be an option. Especially due to covid etc.

Its done now and I have a “Knee Wee”...

Lets see how it went when I can actually speak to someone!

My only other option would be wait till 20th January for the next surgical list, hopefully I will be past most of this rubbish by then.😀

Buzzy

 

Edited by member 31 Dec 2020 at 13:35  | Reason: Not specified

 
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