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Post PSA symptoms - advice needed

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User
Posted 15 Jun 2024 at 17:56

Hello, I posted recently and really appreciated feedback and guidance based on the experience of others.


I'm still at the stage of not being brilliant at or finding it easy to quote all my numbers so I hope it's ok to say locally advanced PCa with RARP and first PSA two weeks ago.


I was really happy and relieved to get an undetectable PSA , and so was my wife - was touch and go whether it was operable, some questionable things spotted on my PET scan and rib pains for months pre and post op, but surgeon discounted it and said no need for further scans. I have also had a really rocky recovery post surgery recovery.


I have just had a session with a consultant about rib pains and they were more cautious about it not being PCa, as well as saying that undetectable PSA results couldn't always be trusted and they would start scanning again.


Any relevant experiences and perspectives would be much appreciated - I need to make some decisions and have a serious conversation with my main consultant and need to get my head around this.


Really appreciate any help.

User
Posted 15 Jun 2024 at 18:40
David
Any time there is a < sign it is usually a very good thing with respect to prostate cancer but let the experts take a look at whatever else may be going on with your ribs.

Good luck
User
Posted 16 Jun 2024 at 01:31

Indeed the < sign is the crucial bit. Means beyond the lab test range. So happy days. Doctors usually standardise on the <0.01 report to patients….i had similar when the blood report actually showed <0.006. Since then the local hospital have changed the kit/method (Abbott method) so now gives a lowest range of of <0.025. I think this might be due to too much noise and machine calibration issues as lower reported super sensitive ranges. My view is that so long at whatever number is stated is preceded by a < I’m very happy indeed. 


long may it continue for all as not guarantees in this game so we kind of live from test to test to a fair degree but I’ve found it gets easier although I wobble a few days before my annual test.

Edited by member 16 Jun 2024 at 14:27  | Reason: Not specified

User
Posted 16 Jun 2024 at 13:25

Originally Posted by: Online Community Member


Hi Andy, yes, I'm not there with the numbers yet!


Don't want to over-complicate but have asked on that - copy of lab report says < 0.03 ug/l but consultant's summary of my PSA session says  <0.01ug/l. I have asked for clarification but as I can see lab report I am going with former for now, and yesterday's session was first time I had heard that PSA can be undetectable but not 100% guarantee of being clear at that point.


Thanks


Either <0.03 or <0.01 are good. If you had any active bone mets which were large enough to show on a scan, your PSA would almost certainly be higher.


I should also have asked what your PSA was at diagnosis, because an exception to this would be prostate cancer which hadn't generated a significantly raised PSA in the first place.


Some hospitals only measure PSA down to 0.1, and <0.1 just isn't accurate enough to know how well a prostatectomy went. That's why I asked what your readings were exactly.


 

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User
Posted 15 Jun 2024 at 18:20

Exactly what is your recent PSA reading?
(Undetectable can be a load of things.)

User
Posted 15 Jun 2024 at 18:37

Hi Andy, yes, I'm not there with the numbers yet!


Don't want to over-complicate but have asked on that - copy of lab report says < 0.03 ug/l but consultant's summary of my PSA session says  <0.01ug/l. I have asked for clarification but as I can see lab report I am going with former for now, and yesterday's session was first time I had heard that PSA can be undetectable but not 100% guarantee of being clear at that point.


Thanks


 

User
Posted 15 Jun 2024 at 18:40
David
Any time there is a < sign it is usually a very good thing with respect to prostate cancer but let the experts take a look at whatever else may be going on with your ribs.

Good luck
User
Posted 15 Jun 2024 at 18:48

Thanks Steve, appreciate that.

User
Posted 16 Jun 2024 at 01:31

Indeed the < sign is the crucial bit. Means beyond the lab test range. So happy days. Doctors usually standardise on the <0.01 report to patients….i had similar when the blood report actually showed <0.006. Since then the local hospital have changed the kit/method (Abbott method) so now gives a lowest range of of <0.025. I think this might be due to too much noise and machine calibration issues as lower reported super sensitive ranges. My view is that so long at whatever number is stated is preceded by a < I’m very happy indeed. 


long may it continue for all as not guarantees in this game so we kind of live from test to test to a fair degree but I’ve found it gets easier although I wobble a few days before my annual test.

Edited by member 16 Jun 2024 at 14:27  | Reason: Not specified

User
Posted 16 Jun 2024 at 09:03

Thanks, that's helpful advice, appreciate it. 

User
Posted 16 Jun 2024 at 13:25

Originally Posted by: Online Community Member


Hi Andy, yes, I'm not there with the numbers yet!


Don't want to over-complicate but have asked on that - copy of lab report says < 0.03 ug/l but consultant's summary of my PSA session says  <0.01ug/l. I have asked for clarification but as I can see lab report I am going with former for now, and yesterday's session was first time I had heard that PSA can be undetectable but not 100% guarantee of being clear at that point.


Thanks


Either <0.03 or <0.01 are good. If you had any active bone mets which were large enough to show on a scan, your PSA would almost certainly be higher.


I should also have asked what your PSA was at diagnosis, because an exception to this would be prostate cancer which hadn't generated a significantly raised PSA in the first place.


Some hospitals only measure PSA down to 0.1, and <0.1 just isn't accurate enough to know how well a prostatectomy went. That's why I asked what your readings were exactly.


 

User
Posted 16 Jun 2024 at 13:33

Thanks, PSA was 25, apparently potentially complicated by serious inflammation but obviously a significant score. 


Based on that, I just have to keep going to understand what's really going on with these symptoms.


Thanks for your advice.

 
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