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Six month Psa test what is precise name of test

User
Posted 21 Dec 2019 at 00:44

Hi everyone, my name is Dave. I've got mild aspergers so I don't normally do social media. Hence despite being diagnosed two years ago, I have not posted before. 

A bit about me and my PCa

Diagnosis: Locally advanced, PSA 28, Gleason 4+5=9 (I'm sure you could have done that maths yourselves). 

Treated: hdr brachy, ebrt and 2 years ht.

Due to my aspergers I am obsessed with detail, hence I have a very specific question: the print out of my 6 month PSA test is headed "Se free prostate specif Ag lev". There is another version of the PSA test which is headed "Se prostate specific Ag level". I would like to ask members who get printed copies of their PSA test to tell me if the heading includes the word "free" it would also be helpful if you said which city you are being tested in (for me it is Manchester). Please only reply if you have a printed copy of the test (or online access to it) and can see the exact name of the test.

Thank you Dave

Dave

User
Posted 21 Dec 2019 at 17:42

None of my PSA tests include the free ratio.

I don't think the NHS generally requests the free ratio from the labs, although the labs can do it (costs about £1 extra).

The Graham Fulford Charitable Trust which is behind many of the local free PSA testing events has been collecting free ratio data for some time, and finds it is much more indicative of prostate cancer than PSA, and has been trying to get it routinely used in PSA screening tests in the NHS for prostate cancer. I've never heard of it being used for measuring treatment effectiveness though (i.e. PSA tests after diagnosis).

Edited by member 21 Dec 2019 at 20:05  | Reason: Not specified

User
Posted 21 Dec 2019 at 22:15

Thanks Andy. I've had a look at your profile and I can see you are very much on the ball with managing your treatment. I too requested the MRI images, fortunately mine are only for the pelvis but still quite a lot of images and not easy for a lay person to interpret.

As mentioned in my post my PSA results are headed "Se free prostate specif Ag lev" and the units are ug/L so we are not talking the free:total ratio, we are talking about just the top half of the ratio, a fairly meaningless figure without also knowing the bottom half which I believe is formally known as "Se prostate specific Ag level" which is what most people would just call the psa level (though should be called the total psa level). So I think the lab is either doing the wrong test or mis-labelling the results. The specialist nurse at my six month review didn't seem particularly phased when I pointed out the heading on the test results. My GP says all the results have came back to his surgery with that heading for many years.

The free:total ratio can be somewhere between 10% and 25%, as far as I can tell from the Internet. So if I am having a free psa test instead of a total psa test my psa may be under reported by this factor, and I think that is a problem. So I am trying to find out what the heading is on other people's psa tests to see if I am the exception or if the heading "Se free prostate specif Ag lev" is on everyone's test results. I accept that most people will just look at the number on the results and not check it is the correct test being performed or even if their name is on the top of the test, I'm just hoping that some of the people on the forum have the results of a recent test handy and can confirm what psa test is usual in this country.

BTW Andy glad to here you help others with counselling etc. It can be bewildering having this disease and deciding on the best treatment. 

Dave

User
Posted 21 Dec 2019 at 23:15
John's printout includes both columns - free PSA and PSA - but having had treatment, the free PSA is meaningless so we ignore it, as do his doctors.

Are they providing a reading in both columns on your print out?

Not sure what you mean about the free PSA ratio can be 10-25% ... technically it can be anything from 0-100% but for undiagnosed men with a PSA of between 4 -10 deciding whether or not to have a biopsy, the free PSA ratio is a helpful indicator.

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

User
Posted 22 Dec 2019 at 00:45

Originally Posted by: Online Community Member
I too requested the MRI images, fortunately mine are only for the pelvis but still quite a lot of images and not easy for a lay person to interpret.

Absolutely true. Do you have a proper tool to look through the DICOM images? The CD's usually come with Windows software, but I'm a Mac person, so I use Horos which is free opensource.

I said to my consultant that I'd love to have someone explain the full body MRI scan to me. His eyes lit up and he said,
    "You know, the radiologists are always moaning that they sit in an office and never meet patients. He'd probably love to do this."
My consultant set it up and even wanted to come along too, but couldn't make it, so it was just the radiologist and myself.

The radiologist spent an hour with me, going through the scan in detail as he had done originally, and explaining all the interesting things. He starts at the top of the scull, and works down in 3mm slices through the scull and brain. In his report, he'd commented on a couple of white matter signal anomalies in the brain, so I asked about that. They are tiny bits of dead brain, and apparently someone of my age would normally have many more, so that was more of a plus point than the minus point I'd initially assumed. There was detailed reporting on my spine, with some dehydrated discs resulting in some loss of height, again, normal for my age. One thing that amazed me is that he reported some uneven breast gland growth. What he didn't know is that I'd had gynecomastia (breast bud growth) which I'd been treating with tamoxifen. At the point the MRI scan was done, it was completely reversed (gone) in one breast, but not yet in the other. Only I knew this, but he'd picked it up on the MRI. The other thing (he didn't know) was that my liver didn't like tamoxifen (it caused raised alanine aminotransferase levels in my liver function tests) which would become fatty liver disease if I'd stayed on it a long time. I told him this, and he circled a bit of liver, and the program analysed the fat content by comparing the differently weighted scan images, and reported 8% fat, which was indeed higher than the 5% is should be. (My alanine aminotransferase level is now back to normal, since I stopped needing tamoxifen, and so I hope is my liver fat level.) Anyway, we went through the whole scan in this detail which I found absolutely fascinating.

We didn't actually touch on the prostate much - the whole-body scan is not an mpMRI scan optimised for prostate, so the cancer in the prostate doesn't show well unless you already know where it is. There was a bright white dot in the prostate at the relevant point which I was puzzled about, thinking the cancer can't be that easy to spot. That is apparently a blood clot that failed to be reabsorbed and has since broken down leaving the iron from the hemoglogin behind, which being very magnetic, shows up brightly. It will have been caused by the needle biopsies, not the cancer.

I haven't yet requested my records during treatment (as opposed to diagnosis), but I should do that now I'm finished. That should include something like 25 CT scans from the EBRT, and another 2 CT scans and an MRI scan with all my HDR brachytherapy catheters (needles) in place. I don't need them all, but they don't appear to provide any way to select just some of them.

User
Posted 22 Dec 2019 at 01:40

Thank you Lynn. Before getting on to some technicalities of psa test. I would like to say a really big thank you for your posts over the last two years (I know you have been posting for ten years, but I have only been involved for two years). As mentioned in my first post I am not the sort of person who likes to get involved in social media (perhaps not quite the right name for a group like this), but I have got a great deal of support from reading posts from others not least of all yours. You make really positive posts (as do others) and I am sure there are plenty of people like me who are affected by PCa who just listen (read) in silence, and take comfort from some of the great help on this forum. So take it from me Lynn you are probably helping a lot more people than you think. I'm also glad to read from your biog that John is doing pretty well. It is nice to hear of real people getting through this.

Now for the more specifics on PSA. Yes you are of course right 0-100% is possible. The 10-25% was a figure I had found on a website which suggested a 25% ratio was quite high and indicative of not cancer and 10% was quite low indicative of cancer, with all of this being only of any relevance to people having a psa in the range 4-10 ug/L. So I used 10-25% just to indicate what I believe may be a normal range.

The really important thing for me is that I now have one reply (Andy) saying that free PSA is not mentioned on his results, and now you saying it is mentioned but so is total psa, and only the total is considered important.

I am beginning to think that my psa results may be based on the wrong test, or at the best the lab is putting the wrong heading on the test results. The good news is that my psa, 28.2 at diagnosis was too high whatever test they used, so this would not have affected my treatment options which were more strongly influenced by the gleason score of 9 and the T3 staging.

However going forward I want to make sure the correct test is being used. I don't want to miss detecting a relapse early by having a free psa test which will under report total psa by somewhere between 0 and 100%.

My GP has written to the consultant raising this matter, and the reply was that "labs routinely report total psa" which is what I was expecting, however their was no red flag raised about the fact that all results my GP was getting back from the lab were "free psa". So I am using this post to try and get enough evidence that I can confidently go back to my GP and say your lab test results are out of kilter with everyone else in the UK.

So if everyone on the forum who has a psa result, and knows the exact name of the test performed which will be either "Se free prosatate specif Ag lev" or "Se prostate specific Ag level" could reply to this conversation, letting me know which test is being used, it would really help me to identify if there is a problem with my test and try and fix it. 

Dave

User
Posted 22 Dec 2019 at 02:07

Wow Andy, the MRI stuff sounds amazing. I just use the Windows software on the CD. The bone scan was really easy to understand just a white skeleton with a big black dot on my bladder. I assume the isotope just ends up there, before exiting the body. I then went on Google to see bone scan images to compare it too. I soon realised how lucky I am too have been diagnosed at T3 and not T4.

I requested my diagnosis records because the letters from the consultants were a bit Wishy-washy. I wanted to know the biopsy results to find exactly which cores were involved how many percent etc. So the bone scan and mri were a bit of a bonus.

I'm not sure if the treatment records will add much to my knowledge so I might leave them. 

Dave

User
Posted 22 Dec 2019 at 13:39
I get that you think linearly- I am also on the spectrum - but I think on this occasion, you are being to literal. The consultant would have picked up if the lab was doing the wrong test, because they would be doing the wrong test for all men. You would do better to contact the pathology lab and ask them whether their report layout is recording the total PSA under the free PSA column in error.

You didn’t say what your current result is, or whether they are reporting in both columns.

A free PSA ratio of <10% gives a 50% chance of finding cancer; a ratio of 10-25% is concerning and needs to be explored further. Over 25% is less likely to be cancer.

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

User
Posted 22 Dec 2019 at 13:42
PS thanks for the lovely comments; I know from the number of emails and also from the page reads data that many, many members read without posting. It is great that you have finally decided to dive in 👍🏼
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 22 Dec 2019 at 18:01

Hi Lynn, on my results they don't have two columns just one result followed by a reference range (<3.5 ug/L), and as mentioned earlier that one result is headed "Se free prostate specif Ag lev". I am sure different labs report things differently, it sounds like your lab report is a bit more comprehensive than mine. 

I sort of agree that the consultants should, would, may have, picked up on this, but in my day to day work I come across a lot of professionals who are complacent, they just tick the boxes and collect the pay cheque (fortunately no ones life depends on getting the tax bill right), so I think it is possible for errors to go unnoticed for years. If they have picked up an error in results from this lab, even if it is just the label they put on the test, it would be nice if someone had alerted the lab to save confusing patients like me.

My GP is looking in to this, and if he has no joy I shall try the pathology lab, and then the consultant. 

I don't think there is a wide spread problem in psa testing, just possibly at my gp surgery or from the lab he uses. 

I have deliberately not mentioned my current psa as the response from the three professionals I have raised the matter with has been "oh that's a very healthy figure" and my more important message "but it's the wrong test so the figure is meaningless" seems to get lost in congratulations on having such a healthy psa. So I didn't want this thread to become a load of replies from people saying "well done that's a great psa"

However just to satisfy anyones curiosity my free psa is <0.1ug/L, my total psa is unknown.

Thanks to Andy and Lynn I am now fairly certain that I am being monitored by free psa rather than total (or at the best having the results mis-labeled). And that I should be monitored by total psa, or someone at the lab needs to change the labeling.

Dave

User
Posted 22 Dec 2019 at 19:29

I only had one actual lab report, with the following .

Results Report

Clinical chemistry- prostate specific antigen ( equimolar)

Prostate specific AG-EQU. 0.03 ug/L [ 0.00 -4.00]

Tested in Nottingham, 

Thanks Chris

 

User
Posted 22 Dec 2019 at 20:24

Thank you Chris. That is exactly the information I need. "Prostate specific AG" is now officially called "Se prostate specific AG level" and is a measure of total psa, not all labs will be using the new name but the test is the same. I must admit I haven't heard of equimolar before but I know a bit about chemistry so should be able to decipher this.

So now I have identified three test results (Andy, Lynn, Chris) all using "total psa" and all in different parts of the country to me, and none other than my own using free psa (I know Lynn's has free psa as well, but clearly the medical staff know to disregard it) 

I now know when I raise this with GP, lab etc. that the use of "free psa" on my results is not typical. I hope it is just a case of mis-labelling, new names were introduced in Oct 2014 maybe my lab just picked the wrong name. 

The more people who can contribute with the exact wording of their psa test the better. I would certainly be very interested in anyone whose test is labelled "free psa" or similar, with no reference to total psa; they would be in exactly the same position as me.

Thank you everyone who has contributed so far, and anyone who is busily looking for their results so they can contribute soon. 

Dave

User
Posted 22 Dec 2019 at 20:27
I’ve just looked at my latest PSA test results printout, and the name of the test is “Tumour marker level (X773B)”, whatever that may mean! The actual result is labelled “Total PSA”, though.

Chris

User
Posted 22 Dec 2019 at 21:15

Great thank you Chris. I've just done a bit of searching for that test name, and I can't find any more details than it says in the name. However the result titled "total psa" is clearly evidence that free psa is an oddity. So, so far total psa is in the lead by a healthy margin.

Keep those results coming in. 

Dave

User
Posted 23 Dec 2019 at 00:20
"on my results they don't have two columns just one result followed by a reference range (<3.5 ug/L), "

You are worrying unnecessarily - that is the accepted range for total PSA, not free PSA. I think they have mislabelled the heading.

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

User
Posted 23 Dec 2019 at 02:20
Just checked my Print outs for last 9 years. Serum prostate specific antigen level (XabAM) ....Result X.XX ug/L There is also ranges for ages but this is not applicable to somebody who has had treatment so can be ignored in my case, These figures from blood at my GP Surgery have always been accepted by my hospital and tally with those at the hospital when I have had PSA taken there at the time of biopsy or treatment, so must be the usual reference. There is another column headed 'Normality' but is left blank and I am sure is not related to another way of assessing PSA.
Barry
User
Posted 23 Dec 2019 at 10:29

Thank you Barry. That is another "total". The 5 letter codes beginning with X should be useful I have found a reference to some of them. 

Dave

User
Posted 26 Jan 2020 at 13:11

Finally I have the answer. The test results are sent electronically from the test machine to the gp surgery. The test machine had been set up to send the wrong code for the test. At the lab the report looked correct, but by the time it got to the gp surgery it was wrong.

The head of the lab wrote to me apologising, and said it should have been found in testing the systems, but it was before her time, so not her fault. 

So my test results were for total psa, they were just headed wrong and all future tests will be correctly headed, I'm told. 

Thank you to all the members who replied. It gave me enough ammunition to pursue this. 

In this case nothing serious went wrong, but occasionally in the NHS horrendous things happen. I could probably name six hospitals in the last five years which have made the headlines followed by the word "... scandal". So I think it was worth making sure the folk of East Manchester were being given the right test. 

 

Dave

 
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