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Post RP PSA from <0.02 to 0.36 in 6 months

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User
Posted 22 Apr 2022 at 20:52

Ferdie, I have had two vials of blood taken at the same time from the same needle, sent to the same lab at the same time and they came back with a difference of 0.01. The 0.36 sounds like a mistake and a 10 fold increase sounds typical of a lab error. My post treatment PSA has fluctuated but over a period of time the trend was upwards. My oncologist says the machines are reliable it is the patients blood that isn't.

Good that your team are being vigilant but hopefully you can relax and await the next test, you could use the anxiety card and get the next test done a bit quicker.

Remember 70 percent of surgery cases are successful.

Thanks Chris  

User
Posted 23 Apr 2022 at 01:22
Sounds like someone reported the decimal place incorrectly.

Re scans a PSMA PET scan is as good as it gets but you will be lucky (unlucky!?) If it picks anything up at that level. Read Ulsterman profile but remember he had a T3A not a T2 like you guys. I think you just need to relax and wait and see where it goes next.

User
Posted 23 Apr 2022 at 10:15
Ferdie, good news to read this!
User
Posted 23 Apr 2022 at 16:47

Thank you to all for your further positive thoughts and encouragement. We’re certainly much more relaxed than we were but remain curious about the result that sparked off the bout of worry.  Is it the case that PSA tests at hospitals can detect levels of 0.020 and less, but to reduce patient anxiety they give only the most significant digits - as in 0.036 being reported as 0.03 or 0.04? Wondered if anyone had any knowledge/experience of this and if so, whether you can get the full number - if you want it!😀

User
Posted 24 Apr 2022 at 09:32
PSA is a constant source of annoyance. Usually GPs receptionists neglect to mention the <.

Regarding decimal places it's a post code lottery as to what is in use, I prefer the 3 decimal place measure now having dallied with 1 decimal place thinking it would reduce PSA anxiety. It didn't because as soon as I went over 0.05 they started reporting it as 0.1. So I have reverted to 3 decimal places even though it means a 2 hour drive to Wolverhampton. When you are 0.076 it's those last 2 that make the difference!

User
Posted 24 Apr 2022 at 10:45

We think knowing the full number from here on in would be the best thing for us. Will ask the surgeon where and how it can be made available even if it means, like you, travelling a bit further afield.

User
Posted 24 Apr 2022 at 14:54

Hi Ferdie,

So glad things are turning out well. If the test was done at the GP surgery and you have Patient access you may be able to see the original test result. If done at the hospital you are able to see the records.

As an aside, I once worked in a room with foreign exchange traders. They would speak an exchange rate of 1.15 as "one spot one five", in aviation it is spoken as "one decimal one five". It would be so much better if people just told us what was written, rather than what they think the number is.

Similarly never trust anyone saying PSA is "normal", this word is used if PSA is less than 4.0 and is not in the least bit normal for someone without a prostate.

Dave

User
Posted 24 Apr 2022 at 18:04

Hi Dave, the blood’s always been drawn at GP’s and we’ve always assumed analysis was done at the local hospital. But from here on in we’re going to ask to see all readings/records and take nothing for granted.

User
Posted 24 Apr 2022 at 20:31

Hi Ferdie,

GP draws blood and hospital processes it is the same service I get. The results will be on the GPs records rather than the hospital ones.

Most GPs can now register you with an app, the one my GP practice uses is this one.

https://www.patientaccess.com/ 

It has my test results going back several years prior to my registering. So it may be worth seeing if your GP has this facility, most GPs are keen for you to use it as it saves them time. If you register you should be able to see the result which caused this problem, and work out if this was miscommunication.

 

Dave

User
Posted 24 Apr 2022 at 20:56

Thanks Dave - we’ll be all over this! And we’ve made a fairly lengthy list of questions for when we get to speak to urology, hopefully next week.

User
Posted 25 Apr 2022 at 03:33

Really pleased to see the updated PSA result and that the original one appears to be an error 👍🏽

User
Posted 25 Apr 2022 at 12:34

Thank you Elaine! 🙏 

 
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