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First PSA results post op

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User
Posted 15 Aug 2019 at 12:18

Hi All, 


First time poster, but have been reading here for a little while now. I decided in January to have a PSA test as I had turned 50 and was aware of the media drive for men to do so. It came back at 6.1, so I had another and that read 6.2. The usual from there, hospital, MRI, which showed a small area of concern, so biopsy required. That came back with 13 out of 35 samples showing Cancer, mostly with Gleason 4+3 and the target area showing 4+4. Bone scan was clear, and the MRI showed that lymph nodes around area to look normal.


RP took place on July 1st. Yesterday I met with the consultant for the first time to discuss and find out the results of last week's blood test. To say we were worried in the hours leading up is an understatement..  


PSA undetectable! (less than 0.01) Next test in 3 months!


Bladder incontinent, 4 pads a day, ok if sitting or lying down, just walking or movement whilst standing will cause constant drip, only four and a half weeks post catheter though so hoping for improvement. 


Thought I would share whatever the outcome of the test was, so glad it was good. 


FP

User
Posted 16 Aug 2019 at 20:45
Well I have been dry for years now but last night I dreamt I was pissing and it turned out I was!! Not as much fun as the wet dreams I used to have!!
User
Posted 15 Aug 2019 at 12:18

Hi All, 


First time poster, but have been reading here for a little while now. I decided in January to have a PSA test as I had turned 50 and was aware of the media drive for men to do so. It came back at 6.1, so I had another and that read 6.2. The usual from there, hospital, MRI, which showed a small area of concern, so biopsy required. That came back with 13 out of 35 samples showing Cancer, mostly with Gleason 4+3 and the target area showing 4+4. Bone scan was clear, and the MRI showed that lymph nodes around area to look normal.


RP took place on July 1st. Yesterday I met with the consultant for the first time to discuss and find out the results of last week's blood test. To say we were worried in the hours leading up is an understatement..  


PSA undetectable! (less than 0.01) Next test in 3 months!


Bladder incontinent, 4 pads a day, ok if sitting or lying down, just walking or movement whilst standing will cause constant drip, only four and a half weeks post catheter though so hoping for improvement. 


Thought I would share whatever the outcome of the test was, so glad it was good. 


FP

User
Posted 22 Aug 2019 at 11:58
Your PSA is similar to some women. Many labs have stopped offering PSA tests to 2 or 3 decimal places due to unreliability - a rise from 0.03 to 0.07 could be because they have recalibrate their machines, bought new equipment, because of a bit of infection or just because you sneezed.

If it goes above 0.1 it would be wise to ask for a referral to oncology but at the minute it could simply be your natural (non cancer related) PSA level settling.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 15 Aug 2019 at 13:28
Great stuff hope the waterworks sort themselves out soon..
User
Posted 15 Aug 2019 at 13:31
Brilliant!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 15 Aug 2019 at 13:58

Good outcome, you will be relieved to say the least . Hopefully your urinary control will return. I presume you’re doing pelvic floor exercises?

Ido4

User
Posted 16 Aug 2019 at 16:12

Hi


I had an RP in September 2018 and was leaking all over the place in the early days.  It improved bit by bit until I stopped using pads in this April.  Every now and then, I can still get caught out, often by doing unusual bending movements, but even that diminishes with time.


I'm sure you'll get there in the end.  Wonderful PSA result, take comfort in that. 

User
Posted 17 Aug 2019 at 08:41

Hahaha!

User
Posted 22 Aug 2019 at 13:05
PS - I bought John a Harley Davidson as a surprise a few years ago. Buy the bike, live your best life!

FP, perhaps keep the kidney and settle for an old Porsche?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 08 Nov 2020 at 21:42

Originally Posted by: Online Community Member


A discussion about psa tests is always interesting but this was restarted by someone called Alex who replied to a 1 year old post and then it continued with someone called Schulze who seems to have deleted their post unless they changed their name.   


As long as I've been on this forum the discussions about psa haven't changed one iota, which is apparently an extremely small amount.  Time a new way to test was introduced.  A home testing kit with accuracy down to 0.03 +/- 0.005 from a fingerprick test would be useful.



No. I do not practice thread necromancy, unless relevant.


I replied to a comment/question by someone else. Most likely it was Schulze, who has subsequently deleted all their posts in this thread. 😡Now I wish I had quoted it.

_____


Two cannibals named Ectomy and Prost, all alone on a Desert island.


Prost was the strongest, so Prost ate Ectomy.

Show Most Thanked Posts
User
Posted 15 Aug 2019 at 13:28
Great stuff hope the waterworks sort themselves out soon..
User
Posted 15 Aug 2019 at 13:31
Brilliant!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 15 Aug 2019 at 13:58

Good outcome, you will be relieved to say the least . Hopefully your urinary control will return. I presume you’re doing pelvic floor exercises?

Ido4

User
Posted 15 Aug 2019 at 14:05

Yes a big weight off of my mind, obviously not counting any chickens before they are hatched, just simply enjoying the moment. Am now a black belt 2nd dan at pelvic floor exercises and I am thinking of starting a class..

User
Posted 16 Aug 2019 at 16:12

Hi


I had an RP in September 2018 and was leaking all over the place in the early days.  It improved bit by bit until I stopped using pads in this April.  Every now and then, I can still get caught out, often by doing unusual bending movements, but even that diminishes with time.


I'm sure you'll get there in the end.  Wonderful PSA result, take comfort in that. 

User
Posted 16 Aug 2019 at 20:45
Well I have been dry for years now but last night I dreamt I was pissing and it turned out I was!! Not as much fun as the wet dreams I used to have!!
User
Posted 17 Aug 2019 at 08:41

Hahaha!

User
Posted 22 Aug 2019 at 11:55

Hi Andrew,


I type this as I sit looking at Porsche's on auto trader and think about selling a kidney. Now get that bike and scare yourself senseless.


FP

User
Posted 22 Aug 2019 at 11:58
Your PSA is similar to some women. Many labs have stopped offering PSA tests to 2 or 3 decimal places due to unreliability - a rise from 0.03 to 0.07 could be because they have recalibrate their machines, bought new equipment, because of a bit of infection or just because you sneezed.

If it goes above 0.1 it would be wise to ask for a referral to oncology but at the minute it could simply be your natural (non cancer related) PSA level settling.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 22 Aug 2019 at 13:05
PS - I bought John a Harley Davidson as a surprise a few years ago. Buy the bike, live your best life!

FP, perhaps keep the kidney and settle for an old Porsche?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 10 Sep 2020 at 13:26

《Response to a post which has now been deleted》


Someone more knowledgable will be along in a minute, but...


From what I've read in other threads on here, it seems that they don't normally sound the alarm bells until you hit 0.2. Certainly in the surgery document I was given, one of the stated aims of surgery was to...

"reduce your PSA to <0.1 ng/ml" and you are still below that. Although it does look like there is a very gradual upward trend.


The other thing is that if just a few cells were left behind, they will be difficult/impossible to detect on a scan (for RT targeting). So, waiting until it's large enough to spot, so they can zap it with RT, seems to be the favoured option.

Edited by member 08 Nov 2020 at 21:44  | Reason: Not specified

_____


Two cannibals named Ectomy and Prost, all alone on a Desert island.


Prost was the strongest, so Prost ate Ectomy.

User
Posted 10 Sep 2020 at 13:50

Three consecutive rises above 0.1 is one test for intervention and it would appear you aren't there yet unless there is some other sign in your pathology report.  


If it's been almost the same for 2.5 years it would appear stable.  If it is rising say 0.01 every three or six months it would appear that intervention will be needed within a couple of years.  


It would be useful if you wrote every test result in your profile.


All the best, Peter

User
Posted 10 Sep 2020 at 14:25
John's has been hovering between 0.09 and 0.11 for nearly 8 years - I wouldn't be rushing to have additional treatment that might not actually be needed. I would keep on with the 3 monthly tests though so that if you do get 3 rises above 0.1 it is picked up quickly
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 11 Sep 2020 at 15:22
In NICE guidelines, the threshold for defining biochemical recurrence post-RP is PSA >0.2 OR 3 successive rises over 0.1 OR evidence of metastases / cancer activity - referral to oncology will usually only happen if one or more of these apply. So at this point, you still don't fall into the group that have had a biochemical recurrence.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 11 Sep 2020 at 16:05

My post RARP letter said I would be referred back to the consultant if I broke the threshold of 0.1. In theory it meant I went back to three month testing. At some point as the rise continued I either asked or got referred to oncology. SRT started at 2.3 or 2.7. Probably Lyn told me to ask😀.


Thanks Chris

User
Posted 11 Sep 2020 at 17:06
Ha ha ha.

Schulze, you can see John's post-op PSA history on my profile - it crept up steadily as yours is doing but the uro didn't refer him to oncology until we had the 3 rises over 0.1 - I think it was 0.16 at the point of referral. He was amenable to an earlier referral but J was in denial; he didn't really want to accept it was necessary and he also wanted some normality (whatever normality means post-op) before thinking about more treatment & more potential side effects. Now we are in the situation where the PSA bobs around the 0.1 mark but we haven't had 3 successive rises above 0.1 so while we are resigned to it at some point, he isn't currently deemed to have had a second biochemical recurrence.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 11 Sep 2020 at 19:19
Can I ask a question of the more knowledgable here? If your Prostate is supposed to have been completely removed, does a rising PSA indicate that some is still left, or can it arise from the cancer "popping up" at a remote location?
User
Posted 11 Sep 2020 at 19:27
PSA is badly named - prostate specific antigen is a misnomer because it isn't prostate specific. Very tiny amounts can be produced in other parts of the body, and by women - breast milk has PSA in it, for example. After a prostatectomy, the PSA level should be very, very tiny but is never zero because of the amount that may be generated elsewhere. Men who have some type of ejaculation after RP can be confused as dry orgasm is almost guaranteed side effect - often, the small amount of liquid which is ejaculated is actually fluid from the Cowper's glands - this fluid can contain PSA and a man in high distress or in an adrenal rush may have higher amounts of PSA in his blood stream afterwards.

Interestingly, UK research a couple of years ago found that women had detectable PSA levels after an orgasm - as a result, police pathologists were given new guidelines for rape investigations.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 12 Sep 2020 at 07:20
Thanks Lyn. Interesting about the Cowper's glands; to me it seems logical that they would still produce fluid, I wonder why they don't in most men.

I knew that PSA can rise temporarily for other reasons, because it has happened to me - the GP told me to take a second test when there was a big rise over 10 years ago and the second test was much lower, more like the previous number.

But my question was more aimed at the steady rise situation. If that happens, is it indicative that some prostate remains, or does any metastasis caused by prostate cancer also cause PSA to rise? I'm assuming the latter.
User
Posted 12 Sep 2020 at 09:51
A steady rise followed by a plateau might be down to 'healthy' prostate cells left behind multiplying and / or the body finding its own 'normal', but the plateau is expected to be at less than 0.1.
A steady rise that keeps rising is either prostate cancer cells left behind in the prostate bed multiplying (biochemical recurrence), metastases, or (in the case of men who have brachy / focal treatments) a new prostate cancer in a different part of the prostate.

Rarely, rising PSA may indicate a completely different problem - breast cancer, thyroid and adrenal problems can all affect PSA I think.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 12 Sep 2020 at 09:55
Schulze1862 I noticed you were a G6 at final pathology the same as I was, I too have had gradual increase at supersensitive levels, I think I saw someone else on here too in the same situation.

Might be worth asking for a second opinion on the pathology because if it really was only G6 it is means the risk of any increase at SS levels is significantly less.

Non of this means you can ignore it but maybe you can breath s little easier.
User
Posted 08 Nov 2020 at 11:22

《Response to a post which has now been deleted》


Did you read our responses above? Was this test done at the same lab as the previous ones?


You don't technically have a recurrence until you have two more rises after this one so while you can ask for an oncology referral, there will be no rush to treatment. Probably just as well with the COVID situation.


The gentle steady rise combined with your pathology indicates cells in the prostate bed rather than far flung mets. Once you are seen by oncology, you will probably be offered HT to start quite quickly, with RT 3 or 6 months later. After this year, and now probably a long winter of further lockdown and restrictions, you might decide that you want a couple of nice holidays etc before being restricted again by the RT?

Edited by member 08 Nov 2020 at 18:14  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 08 Nov 2020 at 15:32

A discussion about psa tests is always interesting but this was restarted by someone called Alex who replied to a 1 year old post and then it continued with someone called Schulze who seems to have deleted their post unless they changed their name.   


As long as I've been on this forum the discussions about psa haven't changed one iota, which is apparently an extremely small amount.  Time a new way to test was introduced.  A home testing kit with accuracy down to 0.03 +/- 0.005 from a fingerprick test would be useful.

User
Posted 08 Nov 2020 at 18:12
That's weird - Schulze has deleted all previous posts.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 08 Nov 2020 at 21:39

Originally Posted by: Online Community Member
That's weird - Schulze has deleted all previous posts.


Yeah I noticed that last night. Made  a mess of the thread and left a lot of orphaned replies. 😡

_____


Two cannibals named Ectomy and Prost, all alone on a Desert island.


Prost was the strongest, so Prost ate Ectomy.

User
Posted 08 Nov 2020 at 21:42

Originally Posted by: Online Community Member


A discussion about psa tests is always interesting but this was restarted by someone called Alex who replied to a 1 year old post and then it continued with someone called Schulze who seems to have deleted their post unless they changed their name.   


As long as I've been on this forum the discussions about psa haven't changed one iota, which is apparently an extremely small amount.  Time a new way to test was introduced.  A home testing kit with accuracy down to 0.03 +/- 0.005 from a fingerprick test would be useful.



No. I do not practice thread necromancy, unless relevant.


I replied to a comment/question by someone else. Most likely it was Schulze, who has subsequently deleted all their posts in this thread. 😡Now I wish I had quoted it.

_____


Two cannibals named Ectomy and Prost, all alone on a Desert island.


Prost was the strongest, so Prost ate Ectomy.

 
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