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User
Posted 22 Apr 2018 at 17:54
What a worrying weekend until this afternoon.

Husband's first PSA after RARP was <0.1 in January so everybody happy about that. He is due to see the urologist again on 3rd of May so had his 2nd PSA done week before last and phoned the GP surgery on Friday for the results.

He was told it was 0.03 so after realising they were using a new assay/ equipment I started investigating and realised this could be bad news.

Research from Johns Hopkins seems to show that readings ≥ 0.03 means persistent PSA and future likelihood of recurrence so sleepless nights and squeaky bum time again.

Hoping that perhaps the receptionist had missed off the < I was all set to ring the surgery tomorrow to check. It turned out we could have looked up the test results on line and didn't realise the surgery had started offering this facility.

It turns out his reading was < 0.03 so phew!!!! it's amazing how that little < changes your whole outlook on things and what a rollercoaster this journey indeed is.

At least we know we can check results ourselves now hence avoiding misunderstandings over the phone. I take it they are now using the Tosoh Assay as that seems to stop detecting PSA below 0.03.

We are just grateful for another 3 months reprieve. I suppose everyone post treatment gets the collie wobbles at PSA testing time so we'll need to get used to it. 😐

User
Posted 22 Apr 2018 at 17:54
What a worrying weekend until this afternoon.

Husband's first PSA after RARP was <0.1 in January so everybody happy about that. He is due to see the urologist again on 3rd of May so had his 2nd PSA done week before last and phoned the GP surgery on Friday for the results.

He was told it was 0.03 so after realising they were using a new assay/ equipment I started investigating and realised this could be bad news.

Research from Johns Hopkins seems to show that readings ≥ 0.03 means persistent PSA and future likelihood of recurrence so sleepless nights and squeaky bum time again.

Hoping that perhaps the receptionist had missed off the < I was all set to ring the surgery tomorrow to check. It turned out we could have looked up the test results on line and didn't realise the surgery had started offering this facility.

It turns out his reading was < 0.03 so phew!!!! it's amazing how that little < changes your whole outlook on things and what a rollercoaster this journey indeed is.

At least we know we can check results ourselves now hence avoiding misunderstandings over the phone. I take it they are now using the Tosoh Assay as that seems to stop detecting PSA below 0.03.

We are just grateful for another 3 months reprieve. I suppose everyone post treatment gets the collie wobbles at PSA testing time so we'll need to get used to it. 😐

User
Posted 23 Apr 2018 at 14:38
Ann

When I spoke to the nurse specialists, they said that if I were in a hospital which didn't use the ultra sensitive test, I'd have been continually told I was undetectable.

I know there is a debate within the medical community about the use of the ultra sendite test, but it has worked in my favour.

My oncologist is of the view that none of the other scans currently available, other than PSMA scanning, would have picked up the lurking cells.

Ulsterman

User
Posted 23 Apr 2018 at 16:50
P

Not sure if this is the study you had come across.

https://prostatecancerinfolink.net/2015/09/12/johns-hopkins-ultrasensitive-psa-after-surgery-predicts-biochemical-relapse/

Links don't always do what I want on an android phone. The study is probably a couple of years old.

My post op PSA started at 0.03 and I had BCR within three years. Without the more sensitive test I would have thought all was well for nearly three years and then have been disappointed to find surgery had not done what I expected.

Thanks Chris

Edited by member 23 Apr 2018 at 17:04  | Reason: Not specified

User
Posted 23 Apr 2018 at 21:49
Hi Peggles,

I had that problem with the only 2 psa results given by GP staff. For some reason their system doesn't recognise the <. Luckily for other reasons I knew they were wrong.

I'd be agitated if my hospital went to <0.1. In my opinion a rise above <0.05 will be ominous and I'd want to know the rate of change as soon as possible. The rate of change often denotes likely survival time. Although hopefully hormones or other may arrest it.

Regards

Peter

Edited by member 23 Apr 2018 at 22:17  | Reason: Not specified

User
Posted 24 Apr 2018 at 00:23

Ultra sensitive tests just cause so much unnecessary anguish - life has been much better since our lab stopped offering these tests.

The Johns Hopkins paper goes against other recent views but even if they are right, saying that a PSA of 0.03 is indicative of recurrence will only work in areas where the lab machine goes down to 0.01. Since many more labs have a lower limit of 0.03 it simply wouldn’t work - every man would be thinking they needed SRT.

What is more interesting in the JH link is the very high proportion of men (in all groups) who had biochemical recurrence within 11 years. Puts into context what many oncos are saying - RP on its own is not the best treatment option for PCa :-/

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

User
Posted 24 Apr 2018 at 09:28

I agree with you both. And in my opinion you can’t claim to have ‘cured’ a G6 (3+3) with an RP as you will never know if it was going to be a troublesome one or not.

I don’t know how many men with a G6 are given RP’s each year - not sure if the statistics are calculated.
i

User
Posted 24 Apr 2018 at 09:28
I wonder if the advent of PSMA scans will be a relevant factor in how hospitals use the ultra sensitive PSA tests. My oncologist was going to get a choline pet scan but said with a PSA of 0.023 it was probably not going to show anything. If PSMA scans can be reliably shown to be picking things up at lower levels, and if they were more available, maybe then the ultra sensitive scan would lead to earlier identification of cancerous cells. So, in summary, without the PSMA scan, the ultra sensitive PSA levels were not telling the full story. I think it takes both. And, was I 'lucky' in that my PSMA scan picked things up? Others with higher PSA levels than me have had scans which showed nothing.

Ulsterman

User
Posted 25 Apr 2018 at 15:50

francij4, I'm not sure which report you're referring to.   There's some fairly loose use of terminology across the spectrum.  The term 'first starts rising' doesn't seem interchangeable with 'recurrence'. Undetectable is sometimes used to mean below 0.1 even if a value below that is known. 

Good luck on Monday.

 

User
Posted 01 May 2018 at 09:16
Great news.

Ian

Ido4

User
Posted 01 May 2018 at 18:05
I'm really pleased to hear your great news.😀

Best Wishes

Ann

User
Posted 01 May 2018 at 18:50

Great news francij. Very pleased for you

We can't control the winds - but we can adjust our sails
User
Posted 01 May 2018 at 20:39
Good news always welcome Jonathan. Long may it continue. Tom
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User
Posted 22 Apr 2018 at 19:47

It seems a bit ridiculous of JH to have a stance like that - your PSA as a woman is probably higher than 0.03 after a good orgasm and a breast feeding woman will certainly have a higher reading, which is why so many British labs have stopped offering ultra-sensitive testing.

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

User
Posted 22 Apr 2018 at 21:04
I would have agreed Lynn but I see that Ulsterman is now having secondary treatment after his PSMA scan detected cancer in 2 lymph nodes when his PSA is only 0.023. His oncologist wants him to follow this course of action.

I know though Tony's urologist would wait until his PSA was 0.2 before pasing him to the Oncologists for HT/ RT. He did tell us this at our first appointment before the op.

I'm just a born worrier though and it's difficult to overcome especially since John's Hopkins is so highly regarded in the world of Prostate Cancer.

We are not complacent though and time will tell. At least we will be able to enjoy our next two holidays to Suffolk and Cornwall in the van before the next dreaded PSA test.

Best Wishes.

Ann

User
Posted 22 Apr 2018 at 22:49

Yes but not a good comparison - Ulsterman was T3 G9 I think, and I suspect his onco would have pushed for salvage RT regardless of the PSA

I have never seen any published paper suggesting that sustained 0.03 was an indicator for recurrence - it is contrary to current knowledge & thinking - so i am interested in where you read it. Do you have a link?

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

User
Posted 22 Apr 2018 at 23:00
My post op PSA was 0.014, then 0.015, 0.019 and finally a year after the op 0.023. The rises along with the original T3b, Gleason 9 and positive margins prompted the salvage radiotherapy.

Ulsterman

User
Posted 23 Apr 2018 at 07:44
Hi Ulsterman.

I don't doubt at all that you have taken the best course of action for you but it just goes to show that as a result of your PSMA scan that cancer can still be lurking somewhere at the tiniest of tiny PSA level i.e what would normally be considered Undetectable.

It's maybe just as well there are ultra sensitive available today for situations such as yours for if you were still having the standard < 0.1 ng/dg test you would have been regarded as undetectable. Hopefully your HT/RT will now knock this b****y

disease on the head especially since you have been able to precisely locate the rogue cells with your PSMA scan.I think we would take that route if/when Tony's PSA becomes detectable.

Hi Lyn. Sods law but I'm struggling to find the article. I can't remember what exactly I googled to come across it but honest it's there somewhere. I will keep looking though and post the link ( although I am a bit rubbish at that on this tablet😣) when I can. It certainly got me worrying at the time.

Best wishes

Ann

User
Posted 23 Apr 2018 at 07:44
Hi Ulsterman.

I don't doubt at all that you have taken the best course of action for you but it just goes to show that as a result of your PSMA scan that cancer can still be lurking somewhere at the tiniest of tiny PSA level i.e what would normally be considered Undetectable.

It's maybe just as well there are ultra sensitive available today for situations such as yours for if you were still having the standard < 0.1 ng/dg test you would have been regarded as undetectable. Hopefully your HT/RT will now knock this b****y

disease on the head especially since you have been able to precisely locate the rogue cells with your PSMA scan.I think we would take that route if/when Tony's PSA becomes detectable.

Hi Lyn. Sods law but I'm struggling to find the article. I can't remember what exactly I googled to come across it but honest it's there somewhere. I will keep looking though and post the link ( although I am a bit rubbish at that on this tablet😣) when I can. It certainly got me worrying at the time.

Best wishes

Ann

User
Posted 23 Apr 2018 at 14:38
Ann

When I spoke to the nurse specialists, they said that if I were in a hospital which didn't use the ultra sensitive test, I'd have been continually told I was undetectable.

I know there is a debate within the medical community about the use of the ultra sendite test, but it has worked in my favour.

My oncologist is of the view that none of the other scans currently available, other than PSMA scanning, would have picked up the lurking cells.

Ulsterman

User
Posted 23 Apr 2018 at 15:54
Ulsterman. It's great for you that you've picked this up at the earliest possible opportunity and I wish you every success with your treatment. It would be good if everyone with at least high risk Pca was able to follow this route especially if the PSMA test could be done expediently by the NHS. In fact if imaging keeps improving perhaps one day everyone will know exactly where every bit of the cancer is before treatment starts. I expect the cost may prove to be prohibitive though.

Lyn. Still can't find the John's Hopkins article but found another similar one whilst browsing. I can't add the link but if you Google 'Ultra-sensive PSA following prostatectomy reliably identifies patients requiring post-op radiotherapy 'it should come up. It's quite interesting. Hopefully I'll still come across the JH one.

Regards

Ann

User
Posted 23 Apr 2018 at 16:50
P

Not sure if this is the study you had come across.

https://prostatecancerinfolink.net/2015/09/12/johns-hopkins-ultrasensitive-psa-after-surgery-predicts-biochemical-relapse/

Links don't always do what I want on an android phone. The study is probably a couple of years old.

My post op PSA started at 0.03 and I had BCR within three years. Without the more sensitive test I would have thought all was well for nearly three years and then have been disappointed to find surgery had not done what I expected.

Thanks Chris

Edited by member 23 Apr 2018 at 17:04  | Reason: Not specified

User
Posted 23 Apr 2018 at 17:53
Thank Chris. The link you kindly posted is one of the ones I had read and more or less says what my " missing " one says.Yours sadly is a case in point for having had a recurrence. Maybe there is a case then for ultra sensitive tests although I personally don't like the anxiety they cause when that little < is missing.

Regards

Ann

User
Posted 23 Apr 2018 at 21:49
Hi Peggles,

I had that problem with the only 2 psa results given by GP staff. For some reason their system doesn't recognise the <. Luckily for other reasons I knew they were wrong.

I'd be agitated if my hospital went to <0.1. In my opinion a rise above <0.05 will be ominous and I'd want to know the rate of change as soon as possible. The rate of change often denotes likely survival time. Although hopefully hormones or other may arrest it.

Regards

Peter

Edited by member 23 Apr 2018 at 22:17  | Reason: Not specified

User
Posted 24 Apr 2018 at 00:23

Ultra sensitive tests just cause so much unnecessary anguish - life has been much better since our lab stopped offering these tests.

The Johns Hopkins paper goes against other recent views but even if they are right, saying that a PSA of 0.03 is indicative of recurrence will only work in areas where the lab machine goes down to 0.01. Since many more labs have a lower limit of 0.03 it simply wouldn’t work - every man would be thinking they needed SRT.

What is more interesting in the JH link is the very high proportion of men (in all groups) who had biochemical recurrence within 11 years. Puts into context what many oncos are saying - RP on its own is not the best treatment option for PCa :-/

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

User
Posted 24 Apr 2018 at 07:32
Originally Posted by: Online Community Member

What is more interesting in the JH link is the very high proportion of men (in all groups) who had biochemical recurrence within 11 years. Puts into context what many oncos are saying - RP on its own is not the best treatment option for PCa :-/

I would mostly agree with that. We've only be on this horrible journey about 10 months now and as I am reading more and more about men's experiences it seems to be the case that the information out there even from supposedly reliable sources is so very contradictory. To me at least it seems the only ones to be " cured" apart from the very lucky are the 3+3 men who are mainly pushed down the active surveillance route anyway.

Even our Urologist at the post op appointment more or less said he was cured then later on when discussing an AUS if needed after 12 months said they wait first to see if the cancer is back?

User
Posted 24 Apr 2018 at 08:56

Nobody gets cured of cancer - the fortunate will achieve full remission but not many oncos talk about a cure.

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

User
Posted 24 Apr 2018 at 09:28

I agree with you both. And in my opinion you can’t claim to have ‘cured’ a G6 (3+3) with an RP as you will never know if it was going to be a troublesome one or not.

I don’t know how many men with a G6 are given RP’s each year - not sure if the statistics are calculated.
i

User
Posted 24 Apr 2018 at 09:28
I wonder if the advent of PSMA scans will be a relevant factor in how hospitals use the ultra sensitive PSA tests. My oncologist was going to get a choline pet scan but said with a PSA of 0.023 it was probably not going to show anything. If PSMA scans can be reliably shown to be picking things up at lower levels, and if they were more available, maybe then the ultra sensitive scan would lead to earlier identification of cancerous cells. So, in summary, without the PSMA scan, the ultra sensitive PSA levels were not telling the full story. I think it takes both. And, was I 'lucky' in that my PSMA scan picked things up? Others with higher PSA levels than me have had scans which showed nothing.

Ulsterman

User
Posted 24 Apr 2018 at 23:09

Another Hopkins link gives another angle on the extra information that can be gleaned from a very low psa test.  You could argue it doesn't change what they'll do and will give you more worry, but on the other hand it might do the opposite.

 

The info on the link below relates to when psa starts to rise not when it reaches 0.1.  It says the earlier it starts to rise and the faster it rises gives information such as the probability of how long you will be metastasis free.

Hopefully I'll reach at least next December (2yrs) undetectable at <0.05 and hope for much longer.  My Gleason of 4+4 lowers expectations but stage, margins and initial psa aren't so bad.

http://urology.jhu.edu/newsletter/prostate_cancer52.php

 

Edited by member 24 Apr 2018 at 23:21  | Reason: Not specified

User
Posted 25 Apr 2018 at 08:13
That report had a threshold of 0.2 as the indicator of a rising PSA NOT simply a rising PSA as indicated by the USPSA.

I have my next cobsultation on Monday my last USPSA 6 months ago was 0.03, not looking forward to this one!

According to this https://prostatecancerinfolink.net/2011/06/29/can-ultrasensitive-psa-at-3-years-post-surgery-project-delayed-bcr/

If I can stay below 0.04 for another 6 months all will be well!!

Edited by member 25 Apr 2018 at 08:31  | Reason: Not specified

User
Posted 25 Apr 2018 at 15:50

francij4, I'm not sure which report you're referring to.   There's some fairly loose use of terminology across the spectrum.  The term 'first starts rising' doesn't seem interchangeable with 'recurrence'. Undetectable is sometimes used to mean below 0.1 even if a value below that is known. 

Good luck on Monday.

 

User
Posted 26 Apr 2018 at 07:28
My take on it ( and I may be wrong) is that whatever assay/ equipment is used i.e < 0.1, < 0.01, < 0.03 etc when the < disappears that means the PSA is detectable and means a recurrence is more likely but not necessarily inevitable. Only relates to post Prostatectomy cases though of course.

Regards

Ann

Edited by member 26 Apr 2018 at 07:30  | Reason: Not specified

User
Posted 26 Apr 2018 at 07:52

I think that anything without a < sign must surely indicate that there are prostate cells present. If one has had the prostate removed and then several undetectable results and then PSA is detected, my thinking is it must be PCa cells that have growen enough to produce the PSA. My opinion is that the official level for biochemical recurrance of 0.2 should be regarded as the level for intervention (or at least consideration) as the actual recurrence has begun far sooner. That is not to say I necessarsly agree with that level as each case is different.

Just my thoughts, happy to be corrected?

Cheers Bill

User
Posted 26 Apr 2018 at 08:09
Originally Posted by: Online Community Member
My take on it ( and I may be wrong) is that whatever assay/ equipment is used i.e < 0.1, < 0.01, < 0.03 etc when the < disappears that means the PSA is detectable and means a recurrence is more likely but not necessarily inevitable. Only relates to post Prostatectomy cases though of course.

Regards

Ann

If only! The lab my urologist uses changed their assay to the 0.1 version without telling him - my PSA came back as "detectable but not quantifiable" When pushed by the consultant they changed it to 0.025 (6 months previous it was 0.024 so would have been happy with that!) not happy with this the same blood was sent to a different lab and it came back 0.03!

all less than 0.1 ie undetectable in "old money" but all adds to the PSA anxiety!

I guess I will find out on Monday!

User
Posted 26 Apr 2018 at 17:38
Hi Hope you get good results on Monday.

Yes the PSA results are an ever present menace.😠

User
Posted 26 Apr 2018 at 18:41

This is exactly why so many hospital labs have stopped doing the ultra-sensitive tests. There is no reliable evidence that a result without a < is therefore detectable and indicates more likely recurrence. The average woman has a PSA around 0.005 unless she has an orgasm (0.03) or is breast feeding (0.03) or is in the phase just before menstruating (0.02). Breast milk has PSA in it. Some PSA is generated (for both genders) by the adrenal gland, by other cancers, and / or can be found in the liver and pancreas. So a man could have a post-op PSA of 0.05 which stabilises there and never rises or falls, simply down to the tiny amounts being generated in other parts of the body. Failing to recognise this leads to unnecessary salvage treatment - it is the rise that should be taken seriously ... <0.02, 0.02, 0.05, 0.08 would therefore indicate that there is a potential recurrence, particularly if the pathology had found SVI or positive margins.

Women and PSA - https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2033864/?page=3

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

User
Posted 30 Apr 2018 at 23:35
Well I got some good news today - after 2 years of my PSA "ticking up" on the Ultra Sensitive PSA test today I had my first decline since my RP 30 months ago - down from 0.030 to 0.023.

Consultant said 12 monthly tests were now ok as my PSA had been basically stable for 12 months with no treatment.

I realise I am not out of the woods yet but 12 months without a PSA test for the first time in 10 years will be welcome!

User
Posted 01 May 2018 at 09:16
Great news.

Ian

Ido4

User
Posted 01 May 2018 at 18:05
I'm really pleased to hear your great news.😀

Best Wishes

Ann

User
Posted 01 May 2018 at 18:50

Great news francij. Very pleased for you

We can't control the winds - but we can adjust our sails
User
Posted 01 May 2018 at 20:39
Good news always welcome Jonathan. Long may it continue. Tom
 
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