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Post-op PSA of 0.1

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User
Posted 27 Jun 2023 at 16:42

My RP in April went incredibly well, with minimal discomfort.  The pathology report showed that the tumour had not broken through the capsule and that there was clear margin of healthy tissue around what was removed.  My PSA test after 6 weeks showed as exactly 0.1.  The consultant was sufficiently puzzled by this that I was re-tested, again registering as exactly 0.1 after 7 weeks.  As far as I can see everyone writing in the forums seems to have a PSA post-RP surgery of “0.0xx”.  I am scheduled for another test in 6 months’ time and if there are then two consecutive tests over 0.2, I will have a scan.  Why am I feeling slightly uneasy at the outcome so far?  Should I be at all concerned?

User
Posted 28 Jun 2023 at 09:00
Personally, there’s a huge difference between 0.1 and <0.1.
User
Posted 28 Jun 2023 at 20:16

Hi Colwick Chris,

I'm a Christie patient, and my tests since surgery in June 2022 have been either <0.025 or "undetectable".

Regards,

JedSee.

User
Posted 29 Jun 2023 at 21:58
The labs all have very similar machines / equipment / suspensions. It isn't that some hospitals can't offer 2 or 3 dp readings; it is that they have made a decision not to. Ultrasensitive testing post-RP was rather discredited in a large scale piece of EU / UK research a few years ago - when it was published, our hospital (a leading uro-oncology centre of excellence) went from 3dp results to 1dp immediately.

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

User
Posted 29 Jun 2023 at 22:01
Important to note that, at hospitals which only report to 1dp, this usually only applies to results that are less than 0.1 .... between 0.1 and 10, they will often give the result to 2dp. In other words, you might get <0.1, <0.1, 0.1, 0.15, 2.23, etc and then back to 10.0, 10.1, 10.2 ....
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

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User
Posted 27 Jun 2023 at 18:47

Derek, I personally would want a repeat test in three months, it used to be a test every three months in the first year. If I feel the need to have a additional PSA test I ask ,nag or bully my GP for a test.

Thanks Chris 

User
Posted 27 Jun 2023 at 18:59
Thanks Chris. Yes, that was my inclination. A year seems too long to wait for two consecutive PSA tests.
User
Posted 27 Jun 2023 at 20:36
Without doubt push for another psa test sooner , my friend had rp following psa showed rise in psa and was given 33 fractions to mop up remaining cells he’s fine now , undetectable
User
Posted 27 Jun 2023 at 22:37

I had my RARP in December and am tested every three months for the first year and six-monthly after that. My PSA is now showing as less than 0.1 which what I was told to expect. 

User
Posted 27 Jun 2023 at 23:28

Rules may be different in Scotland, but you should be being tested more accurately than to just one decimal place as a prostatectomy patient, so they can check for 3 consecutive increases above 0.1, or hitting 0.2, which are the triggers for more treatment required (in England).

Yes, you want 3 monthly PSA tests too in this situation, or even more often.

Edited by member 27 Jun 2023 at 23:28  | Reason: Not specified

User
Posted 28 Jun 2023 at 01:31
I think i would be asking them to check that the little < sign hasn't just been missed off the results print-out ... we have seen that happen on here before.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 28 Jun 2023 at 08:18
That was my first reaction and maybe the consultant’s too, but he was very clear that the result was exactly 0.1, twice, and that he had never seen that result before. Surely that would have been his first question. I haven’t received his confirmation letter yet, so will query it when it arrives.
User
Posted 28 Jun 2023 at 08:28

I wonder what results the guys at the Christie get after a prostatectomy.  A prof there told me they don't test below 0.1.

Thanks Chris 

User
Posted 28 Jun 2023 at 09:00
Personally, there’s a huge difference between 0.1 and <0.1.
User
Posted 28 Jun 2023 at 10:01

Originally Posted by: Online Community Member

I wonder what results the guys at the Christie get after a prostatectomy.  A prof there told me they don't test below 0.1.

Thanks Chris 

If the lab doesn't test below 0.1, the lowest result will be <0.1 - in other words, "the result is lower than we measure" 

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

User
Posted 28 Jun 2023 at 10:10

Originally Posted by: Online Community Member

Rules may be different in Scotland, but you should be being tested more accurately than to just one decimal place as a prostatectomy patient, so they can check for 3 consecutive increases above 0.1, or hitting 0.2, which are the triggers for more treatment required (in England).

Yes, you want 3 monthly PSA tests too in this situation, or even more often.

No, many hospitals in England (including a number of the leading ones) now only test to 1dp, in line with the EU research and BAUS guidance

Edited by member 28 Jun 2023 at 17:08  | Reason: Not specified

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

User
Posted 28 Jun 2023 at 20:16

Hi Colwick Chris,

I'm a Christie patient, and my tests since surgery in June 2022 have been either <0.025 or "undetectable".

Regards,

JedSee.

User
Posted 28 Jun 2023 at 23:04

Hi,  I sympathise with your situation.   I've long thought the <0.1 threshold too high.  My hospital uses <0.05 which is just about acceptable in my opinion.

Then the period of 6 months seems too long at your stage.  Although if they're only testing at 0.1 they probably think it wouldn't reach 0.2 within 6 months.  Although such an increase at such an early stage wouldn't be good.   

It could be they think your pathology is so good it's alright.   I think I'd be thinking that.

I know mine went to 0.06, 0.09, 0.08, 0.1 over 18 months.   I could have gone at least another 18months and not known it was changing.  Although to be told it was 0.1 would be worrying as you might think it could be rising fast when actually it's wavering with an upward trend.  Knowing this is what I prefer.

I guess it depends how you feel about it.   All the best Peter

 

User
Posted 28 Jun 2023 at 23:45
Thanks Peter. If my PSA after 6 weeks had been anything up to <0.1, I think I would have been more relaxed. Somehow I feel that 0.1 is not a good number to be starting off from, compared with so many others in the forums, and I’m left with a niggling unease about the future. But I’m determined now to get another test in September and I hope that may give me an early indication as to where I’m heading.
User
Posted 29 Jun 2023 at 21:32

All of my PSA tests are noted as being tested using "Chimiluminescence Cobas Roche" which always gives me 2dp results - I wonder what other labs are using?

User
Posted 29 Jun 2023 at 21:58
The labs all have very similar machines / equipment / suspensions. It isn't that some hospitals can't offer 2 or 3 dp readings; it is that they have made a decision not to. Ultrasensitive testing post-RP was rather discredited in a large scale piece of EU / UK research a few years ago - when it was published, our hospital (a leading uro-oncology centre of excellence) went from 3dp results to 1dp immediately.

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

User
Posted 29 Jun 2023 at 22:01
Important to note that, at hospitals which only report to 1dp, this usually only applies to results that are less than 0.1 .... between 0.1 and 10, they will often give the result to 2dp. In other words, you might get <0.1, <0.1, 0.1, 0.15, 2.23, etc and then back to 10.0, 10.1, 10.2 ....
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 16 Dec 2023 at 17:06
I arranged a 3 month private PSA test when on holiday in Spain in September. Result was 0.12. I then had a GP arranged 6 month test at the end of November and the result was 0.2. Following the 6 month follow-up telephone appointment with the consultant. I then had another PSA test, which also came in at 0.2. I think I am now to be scheduled for a PSMA PET scan. Will that lead automatically to some form of treatment or could I end up in a watch and wait situation.
User
Posted 16 Dec 2023 at 19:27
Once you have had the scan you will either know where it is and what treatment is appropriate OR it won't find anything and you will need to decide if you want salvage radiotherapy "blind" or not. At 0.2 it is probably 50/50 if it will find anything.

 
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