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Anxiety

User
Posted 20 Aug 2018 at 00:34
To be clear I had the choice of 6 months or 12 months retest consultant was happy with either. This is a benefit of supsensitive as having done my own research I had already decided that I would not have any further treatment until I reached 0.1 Because I know my PSA is a long way below 0.1 and stable I can take this decision with a reasonable degree of confidence. If I was tested to 0.1 only it could have been 0.099 and it still would have said "less than 0.1" In this scenario annual testing could have resulted in me missing a whole year of whatever salvage treatment I may have decided to take..

Regarding PSA time I went to 0.014 twelve months after my op, 2 years later it had climbed to 0.030, 6 months after that it was 0.023. I find the tests very stressful so I decided that as it was most unlikely to hit 0.1 in 6 months there was no benefit to a 6 month test.

User
Posted 25 Jul 2019 at 00:00
So, just been for latest PSA test and it's gone up again. Husband insists on 3 monthly tests so results since RP in Feb 17 are as follows.

0.01, 0.004, 0.005, <0.003, <0.003, <0.003, 0.004, 0.003, 0.004, 0.006, 0.005, 0.011

Boll***s

As ever Mr P is unconcerned and husband is once again convinced he's going to die.

User
Posted 25 Jul 2019 at 00:37

 

(This post was written thinking the reading was 0.11 when it's 0.011 which is still very low. It's not deleted because people have replied)

It seems quite a jump. I'd want an immediate retest.  Did they not suggest it.

I'd also be interested in whether the same analyser is being used.  Although I've never been convinced doctors know or care much about how the machines work.  Probably it doesn't make a big enough difference to them. Although it might to you.

Hospital,  GP or private, sometimes Macmillan can authorise tests. But better to use the same assay.

Edited by member 26 Jul 2019 at 09:39  | Reason: Not specified

User
Posted 25 Jul 2019 at 01:07
It's probably nothing. Leeds Spire send their bloods to Jimmy's I think, and Jimmy's have been replacing all their testing equipment. You are still nearly 20 x lower than the biochemical recurrence point.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 25 Jul 2019 at 08:49

Originally Posted by: Online Community Member

It seems quite a jump. I'd want an immediate retest.  Did they not suggest it.

I'd also be interested in whether the same analyser is being used.  Although I've never been convinced doctors know or care much about how the machines work.  Probably it doesn't make a big enough difference to them. Although it might to you.

Hospital, GP or private, sometimes Macmillan can authorise tests. But better to use the same assay.

It's the extra sensetive PSA test Petersplaice if he had had your essay it would simply have been <0.06 ie no change. 

 

User
Posted 25 Jul 2019 at 08:55

Originally Posted by: Online Community Member
It's probably nothing. Leeds Spire send their bloods to Jimmy's I think, and Jimmy's have been replacing all their testing equipment. You are still nearly 20 x lower than the biochemical recurrence point.

Lyn your usual "Most hospitals have abandoned the super sensetive assay because it's unreliable" is more reassuring! Especially to us persistent PSA guys! 

Though I note a lot of PSA results posted here are to at least 2 decimal places.

User
Posted 25 Jul 2019 at 09:45
The point with the wife is that the 3dp is showing a steady climb rather than jumping around, which is perfectly fine as it is most likely his body just finding its normal 'healthy' PSA. The jump is out of sync with previous results but I am fairly sure he is tested at the same place as John. If I am right that they are in Leeds, this is the same hospital that has been testing women and finding they they have a PSA 4 to 6 times higher than the wife's husband!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 25 Jul 2019 at 16:07

Very sorry there's a big error on my last post. I was reading it as a jump to 0.11.

 I'm a fan of sensitive testing but <0.003 seems excessively sensitive.  I've read a few papers on this and good cases are made for a minimum sensitivity of 0.03 to avoid natural fluctuations.

Yes, frankij1, I wouldn't know till it reaches 0.06 (or is it 0.05) and am quite happy. Even at 0.06 there is little anyone is going find or to do about it.

Edited by member 26 Jul 2019 at 09:40  | Reason: Not specified

User
Posted 30 Jul 2019 at 21:02
Thanks for all your replies folks. Been a busy couple of weeks, none of it PCa related.

Anyway we are just going to have to sit it out and wait another 3 months for a retest. Or maybe 2 if hubby can persuade Mr P to write a request sooner.

For info hubby has his tests done privately at the Spire in Leeds as the local NHS test only goes to <0.01 whereas Spire go down to <0.003

Spire now send all of their samples from all hospitals to a central lab, (in Cambridge I believe) so not to the local NHS hospital in Leeds that Lynn talks about. This used to be the case but not any more.

There is still an amount of error inherent to the test, whether this latest increase is a signal or noise, only time will tell

 
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