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User
Posted 03 Dec 2021 at 14:53

My psa test result is now detectable at 0.06 almost exactly 5yrs after the op, undetectable is <0.05.

0.06 could be a blip, a slow rise or a fairly big one depending on what it was 9 months ago at the last test, a figure no-one knows.  I was told it could be a blip and the nurse had 2 patients with increases that went down, but they need to get a trend and a psa test in 6 months was suggested.

After some discussion a psa test in 4 months was agreed.   I asked about referal to oncology and a psma test but was told it needs to be heading for 0.2 and is too early.

Very small crumbs of comfort are that the test was 9 months after my last one as I was due to be discharged now at 5yrs,   so my test in April is only a month after the 12 month one would have been due. 

Also I know that many hospitals would regard it as undetectable at 0.06 although to me any detectable increase around that level is bad news.

After reading this community site for 5 years I felt I was able to have a much better conversation with the nurse and am aware there are still quite a few possibilities including no treatment for quite a long time and total cure if the psa rise is slow enough.   Although with a Gleason of 4+4 I was always thinking this could happen and I think only a big increase would shock me.

I'd appreciate any suggestions.

Regards
Peter

Edited by member 16 Aug 2023 at 22:32  | Reason: Not specified

User
Posted 28 Apr 2022 at 18:13

Pete as you will have seen from my post Salvage RT didn't eradicate my remaining cancer cells, did it slow progression of the cancer , who knows. My PSA did drop at first so there was presumably something in the prostate bed.  My onco did say SRT was an educated guess, if you can take the guess work out with a PSMA scan then all the better. Don't be put off with the damage to my bladder, it only causes that amount of damage in around 5 percent of cases. 

Thanks Chris

User
Posted 03 Dec 2021 at 17:23

Originally Posted by: Online Community Member
am aware there are still quite a few possibilities including no treatment for quite a long time and total cure if the psa rise is slow enough.

There is also the possibility that you don't have a recurrence at all. 

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

User
Posted 04 Dec 2021 at 19:39

Biochemical recurrence is >0.2 OR three successive rises over 0.1 OR positive margin + 0.1. Gleason score makes no difference to the definition of biochemical recurrence.

You can't calculate doubling time until you have three detectable results. Hopefully, you will never need to

Edited by member 04 Dec 2021 at 19:56  | Reason: Not specified

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

User
Posted 05 Dec 2021 at 02:55
If you were under the care of my billion-pound super-hospital here in Coventry, your PSA would be ‘undetectable’ as they only test to 0.1, so my reading of <0.1 last week, four years after surgery, suits me fine.

Keep calm and wait until your next PSA, in say, six months time.

Best of luck.

Cheers, John

User
Posted 29 Apr 2022 at 17:59

Pete, I developed a urethral stricture after surgery and is was thought HT would make the SRT to toxic and hinder the healing process.

When I had treatment, SRT used to start at around 0.2. 0.2 might just be high enough to spot something.

I was refused a PSMA scan , also back in the dark ages, well five years ago, I was told if they found an area of concern outside of the prostate bed I would not get SRT, thankfully things have changed and I believe they will now treat a limited number areas.

As part of a trial,I have a CT scan and Bone scan next week along with blood tests. Once that is done I am going ask about a more proactive approach.

Thanks Chris

User
Posted 29 Apr 2022 at 22:03
As someone on the same path as you, I was told by the oncologist that a scan was not likely to be particularly informative until PSA was higher than 0.5 - but that the prospects for successful salvage radiotherapy were best when PSA was under 0.5 and the doubling time was more than 6 months.

So fingers crossed for you.

I am currently on hormone therapy, but radiotherapy was delayed because of a polyp in my rectum which needed removing first. I am hoping that when I see the oncologist again in a few weeks' time he will move on with RT, otherwise it is another extension to the hormone therapy.

User
Posted 29 Apr 2022 at 23:27

hi J-B,  Good luck with the polyp.  It's interesting to read what your consultant said.

I've read that psma is about 30% accurate at psa 0.2 and 50% at 0.5 and that basically it sees clearly something about 4mm across whereas a standard PET sees 7mm.  Although they do register at smaller sizes. 

I'm not really wanting to wait beyond 0.2 in case it spreads, assuming it hasn't.   I have Gleason 4+4 which makes me hope my doubling rate stays over 6 months.  I don't know of polyps but hope they don't find one.

If your psa is still declining it's possibly better to wait a bit longer before SRT.  Good luck, Peter

User
Posted 08 Jun 2022 at 07:49

Hi Chippers

My RALP (T3a and clear margins) was last November. First PSA test in January was >0.06 which my surgeon considered as undetectable. Second test in May was 0.06, which he also considered as undetectable. Your 0.04 is less than that. Now, I am not sure which one of us, if either of us, should be concerned!

Peter

 

Edited by member 08 Jun 2022 at 07:52  | Reason: Not specified

User
Posted 08 Jun 2022 at 08:09

Hi Peter, As someone used to dealing with analytical instruments, ‘undetectable’ means the instrument isnt capable of determining the value. In PSA testing terms this obviously then relates to which test is conducted. For the ultra sensitive test, ‘undetectable’ is <0.01. That is, the instrument resolution of two decimal places means that anything less than 0.005 (eg 0.004) will not register.
For the less sensitive test I believe this is performed to one decimal place, so ‘undetectable’ would be a result <0.1.

From an action perspective it seems anything less than 0.2 is considered not worthy of follow-up treatment. I am assuming that your surgeon puts the 0.06 result in ‘too low to act’ rather than undetectable, maybe despite that term being used. If an actual value is reported, then it clearly is detectable.

But all that said - point taken. Thanks!!

User
Posted 08 Jun 2022 at 09:01

..... and thanks for demonstrating that I put my 'less than' sign the wrong way round!

As an ex IT man I should be ashamed. Clearly, too long retired. 

User
Posted 17 Aug 2022 at 19:45

Lol. Let’s not start a debate on the usefulness of VAR….

User
Posted 17 Aug 2022 at 20:18

Very good news. 

Dave

User
Posted 17 Aug 2022 at 20:59

Great to see that. 

Peter

User
Posted 17 Aug 2022 at 21:16
Peter, whatever is going on, the variation between measurements (due either to your cells, or to the assay) makes it difficult to pin down an actual number at the moment. However if it continues to be followed over time you will see if there is a consistent trend.

Apparently in some cases this happens and the PSA then stabilises at a "good" value below 0.2, possibly because it is due to some non-cancerous cells which were left behind during surgery but have only recently started functioning again. Alternatively the data so far gives strong hope that even if the rise continues it is slow and thus gives excellent prospects for salvage RT if that becomes necessary.

Good luck, there is nothing you need be doing about it now except continuing to get tested at intervals.

User
Posted 18 Aug 2022 at 12:43

I don't seem to have as much PSA anxiety as other people. I still have a prostate so my threshold is different to yours. My threshold for BCR is >2.1. last two results were <0.1 then 0.2 . So I could choose to be worried about a doubling in the space of six months, or I could choose to say I won't worry until I have BCR.

So I choose not to worry until I have something to worry about. 

I know you were closer to the threshold than me but you hadn't crossed it so worrying was pointless.

Dave

User
Posted 16 Aug 2023 at 23:44

Brilliant Peter. Really hope this continues for you for a very long time.

Best wishes

Elaine

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User
Posted 03 Dec 2021 at 17:23

Originally Posted by: Online Community Member
am aware there are still quite a few possibilities including no treatment for quite a long time and total cure if the psa rise is slow enough.

There is also the possibility that you don't have a recurrence at all. 

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

User
Posted 04 Dec 2021 at 16:52

Thanks Lyn.  I keep telling myself that it might be a one off test result as it only crept over the line.  Although if it's near the line it's not too great. 

Also that in some hospitals it would be undetectable makes me more relaxed for now.  Although I would have been discharged which I didn’t want to happen anyway.

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

My next blood test will be in 4 months and if it has a constant doubling time of 6 months my psa will be 0.0948.

To reach official recurrence of psa 0.2 with a constant 6 month doubling time will take 10.5 months from now.

I need to look up how any recurrence is possibly effected by Gleason 4+4. 

As one of the world’s great worriers I’m surprisingly calm on this for now.

Regards Peter

Edited by member 04 Dec 2021 at 17:04  | Reason: Not specified

User
Posted 04 Dec 2021 at 19:39

Biochemical recurrence is >0.2 OR three successive rises over 0.1 OR positive margin + 0.1. Gleason score makes no difference to the definition of biochemical recurrence.

You can't calculate doubling time until you have three detectable results. Hopefully, you will never need to

Edited by member 04 Dec 2021 at 19:56  | Reason: Not specified

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

User
Posted 05 Dec 2021 at 02:55
If you were under the care of my billion-pound super-hospital here in Coventry, your PSA would be ‘undetectable’ as they only test to 0.1, so my reading of <0.1 last week, four years after surgery, suits me fine.

Keep calm and wait until your next PSA, in say, six months time.

Best of luck.

Cheers, John

User
Posted 05 Dec 2021 at 21:06

Lyn 

NICE say relapse should trigger an estimate of doubling time based on a minimum of 3 readings over a period of at least 6 months.    

My calculations are so that when I get my next psa result I will immediately roughly know what the doubling time is based on 2 readings.     STAMPEDE must use the same formula as there is a doubling time calculator on their website that gives the same answers.

Hopefully I'll never need to, thanks.
Peter

User
Posted 27 Apr 2022 at 21:15

Oh well. Latest psa result is 0.09.   Up from 0.06 on 1st December.   A doubling time of about 8 months.   Next test in 3 months and then if up again will be referred to Oncology.   I expected it to rise and was worried it would be higher so it isn't all a bad feeling.

 

Regards
Peter

Edited by member 28 Apr 2022 at 15:19  | Reason: Not specified

User
Posted 28 Apr 2022 at 15:25

I must admit that the day after the discussion the balance has tilted more towards negative feelings.  Like during diagnosis my biggest concern is if it spreads.   If it doesn't spread then there are quite a few options and I need to get my head round whether to get a psma scan if the hospital doesn't offer it or if to go for a quick blind shot SRT with hormones.

User
Posted 28 Apr 2022 at 18:13

Pete as you will have seen from my post Salvage RT didn't eradicate my remaining cancer cells, did it slow progression of the cancer , who knows. My PSA did drop at first so there was presumably something in the prostate bed.  My onco did say SRT was an educated guess, if you can take the guess work out with a PSMA scan then all the better. Don't be put off with the damage to my bladder, it only causes that amount of damage in around 5 percent of cases. 

Thanks Chris

User
Posted 29 Apr 2022 at 16:05

Thanks Chris, Your note nudged my thinking.  I think what I call psma negatives are largely a fear of what it might find and possibly preclude and how far my consultant will be willing to go.

My psa could be as low as 0.13 when I'm referred to Oncology if it carries on at the current rate.  That might be a bit early to see anything.   Although you never know what's brewing in the shadows anyway.   

I notice you didn't have HT with your SRT and I wondered why that was as according to a nomogram it seems to improve outcome.

There's quite a bit to investigate.

Regards
Peter

User
Posted 29 Apr 2022 at 17:59

Pete, I developed a urethral stricture after surgery and is was thought HT would make the SRT to toxic and hinder the healing process.

When I had treatment, SRT used to start at around 0.2. 0.2 might just be high enough to spot something.

I was refused a PSMA scan , also back in the dark ages, well five years ago, I was told if they found an area of concern outside of the prostate bed I would not get SRT, thankfully things have changed and I believe they will now treat a limited number areas.

As part of a trial,I have a CT scan and Bone scan next week along with blood tests. Once that is done I am going ask about a more proactive approach.

Thanks Chris

User
Posted 29 Apr 2022 at 22:03
As someone on the same path as you, I was told by the oncologist that a scan was not likely to be particularly informative until PSA was higher than 0.5 - but that the prospects for successful salvage radiotherapy were best when PSA was under 0.5 and the doubling time was more than 6 months.

So fingers crossed for you.

I am currently on hormone therapy, but radiotherapy was delayed because of a polyp in my rectum which needed removing first. I am hoping that when I see the oncologist again in a few weeks' time he will move on with RT, otherwise it is another extension to the hormone therapy.

User
Posted 29 Apr 2022 at 23:27

hi J-B,  Good luck with the polyp.  It's interesting to read what your consultant said.

I've read that psma is about 30% accurate at psa 0.2 and 50% at 0.5 and that basically it sees clearly something about 4mm across whereas a standard PET sees 7mm.  Although they do register at smaller sizes. 

I'm not really wanting to wait beyond 0.2 in case it spreads, assuming it hasn't.   I have Gleason 4+4 which makes me hope my doubling rate stays over 6 months.  I don't know of polyps but hope they don't find one.

If your psa is still declining it's possibly better to wait a bit longer before SRT.  Good luck, Peter

User
Posted 08 Jun 2022 at 07:49

Hi Chippers

My RALP (T3a and clear margins) was last November. First PSA test in January was >0.06 which my surgeon considered as undetectable. Second test in May was 0.06, which he also considered as undetectable. Your 0.04 is less than that. Now, I am not sure which one of us, if either of us, should be concerned!

Peter

 

Edited by member 08 Jun 2022 at 07:52  | Reason: Not specified

User
Posted 08 Jun 2022 at 08:09

Hi Peter, As someone used to dealing with analytical instruments, ‘undetectable’ means the instrument isnt capable of determining the value. In PSA testing terms this obviously then relates to which test is conducted. For the ultra sensitive test, ‘undetectable’ is <0.01. That is, the instrument resolution of two decimal places means that anything less than 0.005 (eg 0.004) will not register.
For the less sensitive test I believe this is performed to one decimal place, so ‘undetectable’ would be a result <0.1.

From an action perspective it seems anything less than 0.2 is considered not worthy of follow-up treatment. I am assuming that your surgeon puts the 0.06 result in ‘too low to act’ rather than undetectable, maybe despite that term being used. If an actual value is reported, then it clearly is detectable.

But all that said - point taken. Thanks!!

User
Posted 08 Jun 2022 at 08:12

Hi Bob - Easier said than done I’m afraid, but thanks!!

User
Posted 08 Jun 2022 at 09:01

..... and thanks for demonstrating that I put my 'less than' sign the wrong way round!

As an ex IT man I should be ashamed. Clearly, too long retired. 

User
Posted 17 Aug 2022 at 19:30

January 2021 undetectable <0.05.

December 2021 psa 0.06

April 2022 psa 0.09

August 2022 psa 0.07

Whoopee!  No Wait, VAR appeal.  Overruled. Whoopee!

Edited by member 17 Aug 2022 at 19:38  | Reason: Not specified

User
Posted 17 Aug 2022 at 19:45

Lol. Let’s not start a debate on the usefulness of VAR….

User
Posted 17 Aug 2022 at 20:18

Very good news. 

Dave

User
Posted 17 Aug 2022 at 20:59

Great to see that. 

Peter

User
Posted 17 Aug 2022 at 21:16
Peter, whatever is going on, the variation between measurements (due either to your cells, or to the assay) makes it difficult to pin down an actual number at the moment. However if it continues to be followed over time you will see if there is a consistent trend.

Apparently in some cases this happens and the PSA then stabilises at a "good" value below 0.2, possibly because it is due to some non-cancerous cells which were left behind during surgery but have only recently started functioning again. Alternatively the data so far gives strong hope that even if the rise continues it is slow and thus gives excellent prospects for salvage RT if that becomes necessary.

Good luck, there is nothing you need be doing about it now except continuing to get tested at intervals.

User
Posted 18 Aug 2022 at 11:08

Thanks J-B,  I did some what-ifs but none of them assumed it would go down. 

At low levels and with a short gap between tests a small change can make it look dramatically different.  Also only 0.001 can be the difference between a higher and lower reading.  

As you say, if I took December to August it's only 0.01 higher and it could hopefully put off escalation for over a year. I daren't say longer but that door is ajar.

User
Posted 18 Aug 2022 at 12:43

I don't seem to have as much PSA anxiety as other people. I still have a prostate so my threshold is different to yours. My threshold for BCR is >2.1. last two results were <0.1 then 0.2 . So I could choose to be worried about a doubling in the space of six months, or I could choose to say I won't worry until I have BCR.

So I choose not to worry until I have something to worry about. 

I know you were closer to the threshold than me but you hadn't crossed it so worrying was pointless.

Dave

User
Posted 18 Aug 2022 at 17:22

Your fortunate not to worry much about it.  My worrying comes in phases and when it hits there is no off switch, it runs until it's had enough.

They say worry is a survival instinct, it makes you dig into matters deeper so it's not all bad, maybe.

Edited by member 16 Aug 2023 at 22:34  | Reason: Not specified

User
Posted 16 Aug 2023 at 23:12

Today's PSA result stable after a few ups and downs. 

Hard to understand how this can happen but hope it carries on. 

Cheers!

Whoops I'm not drinking much nowadays.

 

January 2021 undetectable <0.05.

December 2021 psa 0.06

April 2022 psa 0.09

August 2022 psa 0.07

November 2022 psa 0.08.

February 2023 psa 0.1 

May 2023 psa 0.09

August 2023  psa 0.09

December 23 next appointment.  Agreed to go to 4 months between appointments.

 

User
Posted 16 Aug 2023 at 23:44

Brilliant Peter. Really hope this continues for you for a very long time.

Best wishes

Elaine

 
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