Ultra-Sensitive PSA Test sensitivity from July 2023

I am new to the forum, and read this thread with interest.  Like others, I have become aware of the new level of sensitivity that my annual PSA test returned this year, and I would like to explore this further. I couldn’t find a thread specifically on this matter.

I had an RP in 2015, and within 6 months my PSA had become “undetectable” at <0.003.  My surgeon said that they would not do any further investigation until my PSA rose to >0.030.  Good news - plenty of leeway before that threshold.  A few years later my PSA was verbally reported at 0.006.  I discovered this to actually be <0.006 and this now registered as “undetectable”.  Hmm, OK!  The sensitivity still gives plenty of scope for determining a trajectory before 0.030. 

Last December my result was reported as 0.025, and I was shocked. I eventually managed to get through to the secretary who then confirmed that the result was <0.025 (a little arrow pointing to the left?) and set me up with a doctors appointment where he confirmed that the same supersensitive test had been requested, and suggested a retest in February.  This test also gave a result of <0.025.  A bit of research provides the indication of a change of protocol and NICE guidelines that Post-RP sensitivity should be 0.025 with investigation at 0.1.   

I do not find this at all reassuring, and out of line with the principles of early detection and intervention.  I understand the issues with potentially creating anxiety if super-sensitive results vary or increase at the level of 0.01, but surely the answer is not to stop measuring at that reassuring level?

Furthermore, let’s map out a scenario with these sensitivities - perhaps my actual reading this year is 0.024 and it is reported as “undetectable” at <0.025, but it actually represents more than a quadrupling in a year; on the same trajectory, next years reading would be 0.1.  This is way beyond the 0.030 previously advised as an investigation threshold, and already at the new investigation threshold. No warning, no real trajectory data, far less opportunity for early diagnosis or intervention

OK, my head tells me this is an unlikely scenario, but it is scary, and it is bugging me.

So to my questions - 

1. Is anyone else wrestling with this, or have I gone insane?

2. Does anyone know of anywhere (I already checked my local private consultants practice) where it is still possible to get a test of 0.006 sensitivity?  Even privately?

3.  Have I misunderstood the whole equation, or the underlying science?

4. Is this just an understandable NHS cost-saving initiative? Is a test at 0.025 sensitivity materially less expensive (through the entire process) than one at 0.006?

5.  Have I missed some other key piece of information that makes everyone else think this is fine?

Thanks in advance for your insight - it seems that this is a very caring and supportive community from the little I have read so far.  😘

Edited by member 23 Feb 2024 at 18:28  | Reason: Not specified

Hi Healey 

I agree and have posted much the same for some time.  Although some say that readings below 0.03 aren't particularly accurate.  

Also 0.03 is still very very small and detection very very unlikely.

Some hospitals use 0.1 as a threshold as they believe it's causing worry unnecessarily.

Ulsterman is an exception to get useful intervention at a low level.

I think a national standard of 0.05 should be adopted unless there is proof of widespread benefit lower.  Like you an early trend is my preference.  

My hospital starts investigation at 0.2 unless it rises fast.

It might have been better to create your own thread.

Edited by member 21 Feb 2024 at 19:23  | Reason: Not specified

BCR is defined as 3 successive rises above 0.1 OR it reaches 0.2 OR it is measurable and the man had a poor pathology. Ulsterman fits in the latter group. 

Thank you all for your replies.

Firstly, ColwickChris, yes I did mean 0.03 in that paragraph.

The consultants secretary I spoke to said the amendment was within NG12, and was made in July2023.  I looked at the latest version I could find on the intranet and I couldn’t find that amendment. 

I really wanted to pick up on the point made by LynEyre, particularly if the change is to do with reporting, rather than the accuracy of the test itself.  In my head, it is not the accuracy of the readings at a very low level, nor the fact that 99.9999% of the population has a higher reading than I do that is causing me to worry.  I tried to find an analogy to demonstrate my concern, and why I think that changing the reporting is unhelpful.  Let me try this.

Pretend (if you need to) that you are an airplane pilot that has survived a near-miss in-flight incident. And your father and uncle were both killed in air-crashes.  Not surprisingly, you will rely on your radar more than you might otherwise.  You know that the radar shows when it detects other planes at 5km distance, and you only really need to consider taking any action when they are 500m away. Planes go in and out of the periphery of the radar, and you know they are there and that the radar is working but you don’t worry about them.  Then one day, the ground staff fit a ring around the edge of the radar screen that blanks off the range from 5km to 2.5km and tell you they are doing this because that range of the radar has been found to be inaccurate, and in any case you don’t need to worry about them until they are 500M away.  You live with it for a while, and then you find that they have fitted another ring blanking off the range from 2.5km to 1000m and they tell you that air-crash investigators have said that accidents only happen when planes get to be within 300m of each other, and the range from 2.5km to 1000m is a bit inaccurate, and it is distracting for the pilot to know about all those other planes that are extremely unlikely to cause an accident.  How do you feel now? 

Personally, I want to known as far in advance as I can about something I may have to deal with that might kill me, even if it is very unlikely; even if the information I get is potentially inaccurate and I get some peripheral false alarms.  Furthermore, I want to know how fast I am closing in on an event which I may need to take action for. 

Please understand, I know I am very fortunate to be in remission, and that I have nothing really to worry about. But somehow this latest change doesn’t work for me. Perhaps it is because I like to believe I am in remission, and the data I was getting was reinforcing that.  Making that data less supportive of that hypothesis is undermining the belief.

Patients do not decide to treat themselves medically (I will put aside for this discussion those whose metal state is severely impacted by their physical health), medical professionals do.  So I understand that they can receive guidance from NICE to treat or not with different criteria.  But why are we all doing it with blinkers on? 

There may not be an easy answer to this, but I feel somehow a decision has been made to not provide me, or the professionals I rely on, with information about my health because it might cause me concern when it shouldn’t., or cause them to make unnecessary interventions.  And I find that warped thinking. If the problem is that I might be overly worried, or they may intervene when they shouldn’t, please educate and inform us, not restrict the information available to us. 

Perhaps a change of reporting is better, but only for those that are new to the game.  If you never had a radar that shows you planes 5km away, it’s OK to have one that shows you when they get to be 1km away.  

If everyone else is cool with it, I will accept it and try to get back to my flying with my radar blanked out!