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Super Sensitive PSA Blood Test

User
Posted 25 May 2018 at 13:51

Hi, I'm new here so apologies if this has already been covered.

I've been having a super sensitive PSA test (3 decimal places) at the hospital that carried out my robotic surgery but now they have informed me that I wont be tested anymore as I'm not living in that area.

I am worried that I'm not being tested and want to ask if anyone knows where I can get a super sensitive PSA test. I will pay privately if necessary but it's making me anxious not having a test.

Any help would be appreciated.

Thanks, Jules1

 

User
Posted 25 May 2018 at 19:06
Separate the two issues.

Issue 1 - you will need regular PSA tests for the rest of your life. Usually these are 3 monthly to begin with but then 6 monthly and if you stay undetectable then from 5 years post-op you can go to annual tests. See your GP practice for how to book a test.

Issue 2 - usPSA - it isn’t about it being private, it is about what is available in your area. As the science gets rubbished, many labs are stopping - this has been explained to you above. Going private won’t help if the private hospital uses a lab that has stopped doing the test. John has private care and sees the uro at our local SPIRE hospital but they send the bloods to the same lab as our local NHS hospital so when the oncology researchers started to conclude that 2 or 3 decimal places was unreliable we all had to get used to just 1 dp.

Why not see your GP and find out what level of test is available in your area first? You may be pleasantly surprised.

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

User
Posted 27 May 2018 at 00:17
No - it is nothing to do with money. Researchers don't usually feel obliged to save money for the NHS.

It is because the test is unreliable - you can get one blood sample and have it tested twice on the same machine with two different results, or the same sample split in half and sent to two different labs and get two different results. Our onco says the researchers found that one sample can come back at anything from 0.02 - 0.05 due to machine noise.

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

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User
Posted 25 May 2018 at 14:39
Hi Julian,

The subject of super or ultra sensitive PSA tests has come up previously from time to time. Some hospitals have discontinued using them because they are not sufficiently accurate and can give an unrepresentative assessment of PSA. Even without a Prostate there will be minute amounts of PSA produced by the adrenal glands, one machine could produce a different result to another due to calibration differences and what a man has been doing before the test can make a difference also.

It is nevertheless important that you have PSA tests at frequencies prescribed by your treating hospital even if these are no longer done at your hospital. Many of us have these done at the surgery of our GP. The bloods are sent away to the same lab which provides a more uniform result. If your GP is not prepared to do this, I suggest you ask your treating hospital to write to your GP requesting it.

Barry
User
Posted 25 May 2018 at 17:02

Some areas (mid wales for example) have no capability to offer USPSA on the NHS as the path labs they are contracted to don't offer it.

I was treated on the NHS but chose to have my followup privately as I was lucky enough to have insurance through my work. This allowed me to have a USPSA test 2 hours before my consult - it all worked really well until the private clinic stopped doing UPSA without telling anyone! I still see my consultant privately but my blood test is now sent to Wolverhampton NHS and has to be taken 2 weeks before???  Upshot is USPSA is controversial and many hospitals Inc cutting edge centres in the USA no longer do it.

I think  USPSA can be informative (hence I still have it) but is not likely to change treatment decisions as prostatectomy patients are unlikely to have salvage therapy less than 0.1 unless they have agressive Gleason grades or are upstaged  at final pathology when ajuvant RT will be recomended anyway. 

 

User
Posted 25 May 2018 at 17:27

Hi Barry thank you for your reply, I am seeing my GP soon so will ask for a test.

User
Posted 25 May 2018 at 17:34

Hi, thank you for your reply.

i have had 5 years of ultra sensitive tests and now they have stopped just don’t feel happy to stop as I have plotted the graph since I started. I will see my go soon and request a sensitive test as am not happy to wait for the possibility of it going over 0.1 from a last test of 0.009

i read that testing should be carried out for 15 years so would feel happier to keep being tested even if it’s once a year. Does anyone know of a private ultra sensitive test?

User
Posted 25 May 2018 at 19:06
Separate the two issues.

Issue 1 - you will need regular PSA tests for the rest of your life. Usually these are 3 monthly to begin with but then 6 monthly and if you stay undetectable then from 5 years post-op you can go to annual tests. See your GP practice for how to book a test.

Issue 2 - usPSA - it isn’t about it being private, it is about what is available in your area. As the science gets rubbished, many labs are stopping - this has been explained to you above. Going private won’t help if the private hospital uses a lab that has stopped doing the test. John has private care and sees the uro at our local SPIRE hospital but they send the bloods to the same lab as our local NHS hospital so when the oncology researchers started to conclude that 2 or 3 decimal places was unreliable we all had to get used to just 1 dp.

Why not see your GP and find out what level of test is available in your area first? You may be pleasantly surprised.

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

User
Posted 25 May 2018 at 20:31

Hi Lyn

thank you very much for your reply. I will see my GP and take it from there.

many thanks, Julian

User
Posted 26 May 2018 at 23:55

I fear going from 0.09 to some escalated level needing treatment without warning if 0.1 becomes the norm.  I think the reason for increasing the threshold is financial and it could possibly also be to let you continue being less concerned for longer.  My hospitals use <0.05 and <0.06 which seems an acceptable compromise.  It also seems a bureaucratic decision to say you don't live in the area as the two hospitals I've attended are very chilled about where I get tested.  is 3 decimal places <0.001?  That is 200 times lower than the treatment threshold in most cases.  I'd like testing to  <0.03 but if I was <0.001 I'd be very happy indeed.

Also my GP is only electronically connected to one hospital so he prefers that one, although if a more sensitive test is elsewhere I guess he'd refer to there with perhaps some persuasion. I don't normally go to my GP.

Edited by member 27 May 2018 at 00:09  | Reason: Not specified

User
Posted 27 May 2018 at 00:17
No - it is nothing to do with money. Researchers don't usually feel obliged to save money for the NHS.

It is because the test is unreliable - you can get one blood sample and have it tested twice on the same machine with two different results, or the same sample split in half and sent to two different labs and get two different results. Our onco says the researchers found that one sample can come back at anything from 0.02 - 0.05 due to machine noise.

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

User
Posted 29 May 2018 at 16:26

Lyn, This turned out longer than expected.

I’m sure there is good ground for what you say but there is also good ground for another viewpoint on psa thresholds: 

  1. It’s long been said that you should go to the same assay for your blood tests recognising that results can be different at different places.


  2. There are theories about the value of tracking psa levels to determine whether it’s fast growing or if it comes on quickly after the operation.  That gives an indication about what the problem might be and an indication of prognosis, if you want it.  An example is below from John Hopkins and there is similar on Harvard Prostate Knowledge:

 

.............................................................................................................................................................

‘If you have a Gleason score of 5-7, Your PSA increased more than two years after surgery AND your PSA doubling time was greater than 10 months:

Your chance of not developing metastasis(having a bone positive scan) in:  Three years is 95 percent, Five years is 86 percent, Seven years is 82 percent’ 

In support of the higher threshold it also says on another page:

‘Sometimes, there is such a thing as too much information. According to Daniel W. Chan, Ph.D., the only thing that really matters is at which PSA level the concentration indicates that the patient has had a recurrence of cancer. The key threshold is 0.2 ng/ml, which indicates biochemical recurrence. However, it might take months or even years before there is any clinical physical evidence of symptoms.

In the laboratory, Dr. Chan trusts the sensitivity of levels down to 0.1 ng/ml or less. However, the results could vary from day to day. In routine practice, if the PSA is less than 0.1 ng/ml, it is considered the same as nondetectable or zero.’

(Note that the above is based on a report over 10 years old and nearly 20 years in parts which could mean some data is 30yrs old)

.............................................................................................................................................................

 

Also data is often scattered yet statisticians still determine trends.  It must surely be better to find a trend earlier, and there is at least one person on here who has benefited from that.  To have no data beneath 0.1 could be losing valuable insight, even if for most it’s of negligible implication as this can be a debate about the threshold of probability.

Also with regard to the point in your note about researchers not being concerned about the cost impact of their research.  That could be the case but often the researchers don’t know where their research is heading.  Give it to an accountant and they’ll spot an opportunity not in the researchers intention.  Give it to a doctor and they might say something else. 

Having read previous discussions on this it seems, to me, 0.03 is a compromise where inaccuracies are less significant and enable a trend to be established well before it gets critical.   That being said I’m quite happy with 0.05 at the hospital I attend and you seem to be happy with the 0.1 threshold.

Hope that reads amicably enough.  Regards

 

'I'm just a patient and only know feelings'

User
Posted 29 May 2018 at 19:15
Certainly amicable but I am not sure what you intended to communicate as you have quoted one thing and then interpreted it the opposite way. Dr Chan was acknowledging that below 0.1 is unreliable and more recent data has supported his view.

For years, J was getting usPSA tests and we were happy; it was a shock when suddenly they weren't available. And J's PSA trend was so clear that usPSA was irrelevant; his number was behaving exactly as expected for cells left in the prostate bed rather than distant mets. My concern now is to a) reassure men who worry that they are only being offered to 1dp but read on here that they are somehow being given a bum deal when they are not and b) try to reassure men who are being pushed towards possibly unnecessary salvage treatment based on tiny numbers and flawed science.

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

User
Posted 29 May 2018 at 19:53

Dr Chan's comment was added for balance and said it was in support of the other case.  I don't want to be too emphatic even though I think it's highly debatable.

User
Posted 29 May 2018 at 20:08
I know what you mean - I just can't accept it is down to finances since we pay for each PSA test ... if it was still available in our area then the private hospital would continue to do it for us and rub their hands when we pay the bill. However, we live within the boundary of a leading urology / oncology centre (which our private hospital sends bloods to for PSA testing) and they have pulled the plug based on their own research findings so I trust their expertise.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

 
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