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Panic over!

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User
Posted 22 Apr 2018 at 16:54
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 16:54
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 13:38
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 15:50
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 16:04  | Reason: Not specified

User
Posted 23 Apr 2018 at 20:49
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 21:17  | Reason: Not specified

User
Posted 23 Apr 2018 at 23:23

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 08:28

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 08:28
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 14:50

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 08:16
Great news.

Ian

Ido4

User
Posted 01 May 2018 at 17:05
I'm really pleased to hear your great news.😀

Best Wishes

Ann

User
Posted 01 May 2018 at 17:50

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 19:39
Good news always welcome Jonathan. Long may it continue. Tom
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User
Posted 22 Apr 2018 at 18:47

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 20:04
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 21:49

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 22:00
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 06:44
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 06:44
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 13:38
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 14:54
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 15:50
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 16:04  | Reason: Not specified

User
Posted 23 Apr 2018 at 16:53
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 20:49
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 21:17  | Reason: Not specified

User
Posted 23 Apr 2018 at 23:23

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 06:32
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 07:56

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 08:28

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 08:28
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 22:09

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 22:21  | Reason: Not specified

User
Posted 25 Apr 2018 at 07:13
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 07:31  | Reason: Not specified

User
Posted 25 Apr 2018 at 14:50

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.

 

 
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