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11 years post RP

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User
Posted 17 Dec 2023 at 12:23

11 yrs post RP and PSA suddenly 0.12 !!! This is 2nd one in 6 mnths.  Anyone else had similar? Other than keep doing PSA tests, what are others experience of this?

User
Posted 17 Dec 2023 at 13:48

I'd have struggled with a diagnosis when I was as young as that. I doff my cap to you, sir.


I'm 67 and was diagnosed when I was 64. So I find it hard to relate to what you've gone through. 

User
Posted 17 Dec 2023 at 19:51

Arthur,good to see you are keeping on top of your PSA testing. I know of someone who stopped getting tested after many undetectable years, when he eventually restarted testing it wasn't good news.


Hope it is just a blip for you.


Thanks Chris 

User
Posted 17 Dec 2023 at 23:00
Arthur, I would suggest you should get a referral back to oncology so they can monitor. Also you don't say what your post OP pathology Gleason score was?

Having just had a 0.11 8 years after a prostatectomy I have just had a second option at The Royal Marsden. They were reassuring that there was no benefit to starting salvage therapy before 0.2 IE the same position as my regular oncologist at Wolverhampton.

User
Posted 19 Dec 2023 at 22:19

Hi Jim, your oncologist will know more about your cancer than I will.


If you check ChrisJ's profile you will see his post op PSA was 1.5. Which I would describe as a high value. Your 0.2 is a moderately high value, clearly some cancer was left behind. Your PSA at diagnosis was 8.2 . Doing the maths, about 2.5% of your cancer was left behind, that could quite easily be what was left in the positive margin.


If your post op PSA had been 4.1 that would imply that as much cancer was left behind as was removed. A surgeon would not have missed that quantity of cancer if it was next to the prostate (he wouldn't have operated in the first place as it would be quite evident from scans that he could not remove all of it). If you have a high post op PSA (probably greater than 10% of your pre op PSA) then you have to wonder if the remaining cancer is in a distant part of the body.


The fact your lymph nodes were clear is another good sign to suggest your cancer hadn't gone too far.


 

Dave

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User
Posted 17 Dec 2023 at 13:37

Hi Sid,


Welcome to the forum. 🙂 👍


I'm sorry you've seen a rise and hope you can get the problem resolved. I see on your profile that you're 60 were you diagnosed at 49 years old?

Edited by member 17 Dec 2023 at 17:21  | Reason: Not specified

User
Posted 17 Dec 2023 at 13:42

Yes, aged 49.

User
Posted 17 Dec 2023 at 13:48

I'd have struggled with a diagnosis when I was as young as that. I doff my cap to you, sir.


I'm 67 and was diagnosed when I was 64. So I find it hard to relate to what you've gone through. 

User
Posted 17 Dec 2023 at 15:47

Hi Sydney, 


Are you saying this is the second PSA of 0.12 in six months? If so, it would be interesting to know what your previous results were. The reason I ask is that some labs test to different levels of sensitivity, so undetectable could be <0.1 or <0.03 depending on where it was tested. 


As for my experience.. almost two years post op, my PSA rose from <0.03 (undetectable) to 0.07, 0.1 and then 0.12 when I asked for a referral to oncology. I had 20 sessions of SRT last year and my PSA is now <0.01 (the new undetectable at my hospital trust).


Hope this makes sense. 


Regards, 


Kev.

Edited by member 17 Dec 2023 at 15:54  | Reason: Added note

User
Posted 17 Dec 2023 at 15:57

That is seriously good to hear. I didn't have tests until this year as I wasn't followed up by my 'team' so chose to get it in June and then again last week.  Both were 0.11 a s 0.12. I'm pretty sure straight after my RP it was undetectable.  I'm going to do it again in 2 mnths.... we shall see but thank you so much for ypir message. 👍

User
Posted 17 Dec 2023 at 16:58

Initially I thought your post was 11 years of 0s and suddenly a 0.12, and that didn't make any sense to me.


However, initial undetectable then 11 years of unknown and then a 0.12 can be explained and is relatively good news for you.


A high value immediately after RP is very bad news, it almost certainly means a lot of cancer somewhere in your body not near the prostate (it would have been removed if it were). A very low PSA and then a slow rise, suggests a tiny amount of cancer left, probably in the prostate bed, which is slowly growing. This is almost certainly easily treatable with SRT. It is probably your situation but with a decade of tests missing we don't really know.


A sudden jump after a number of years of undetectable doesn't fit a pattern with an easy explanation, it does happen though. 


As your PSA is less than 0.2 officially you haven't got recurrence. If you get three consecutive rises above 0.1 (you've had two already) that would also count as recurrence. You could probably ask your GP to refer you to an oncologist based on your current statistics, if you get another rise in two months you should definitely ask for a referral.

Edited by member 17 Dec 2023 at 21:13  | Reason: Not specified

Dave

User
Posted 17 Dec 2023 at 17:14

Many thanks   

User
Posted 17 Dec 2023 at 19:51

Arthur,good to see you are keeping on top of your PSA testing. I know of someone who stopped getting tested after many undetectable years, when he eventually restarted testing it wasn't good news.


Hope it is just a blip for you.


Thanks Chris 

User
Posted 17 Dec 2023 at 23:00
Arthur, I would suggest you should get a referral back to oncology so they can monitor. Also you don't say what your post OP pathology Gleason score was?

Having just had a 0.11 8 years after a prostatectomy I have just had a second option at The Royal Marsden. They were reassuring that there was no benefit to starting salvage therapy before 0.2 IE the same position as my regular oncologist at Wolverhampton.

User
Posted 19 Dec 2023 at 20:33

Originally Posted by: Online Community Member


Initially I thought your post was 11 years of 0s and suddenly a 0.12, and that didn't make any sense to me.


However, initial undetectable then 11 years of unknown and then a 0.12 can be explained and is relatively good news for you.


A high value immediately after RP is very bad news, it almost certainly means a lot of cancer somewhere in your body not near the prostate (it would have been removed if it were). A very low PSA and then a slow rise, suggests a tiny amount of cancer left, probably in the prostate bed, which is slowly growing. This is almost certainly easily treatable with SRT. It is probably your situation but with a decade of tests missing we don't really know.


A sudden jump after a number of years of undetectable doesn't fit a pattern with an easy explanation, it does happen though. 


As your PSA is less than 0.2 officially you haven't got recurrence. If you get three consecutive rises above 0.1 (you've had two already) that would also count as recurrence. You could probably ask your GP to refer you to an oncologist based on your current statistics, if you get another rise in two months you should definitely ask for a referral.



Hi Sydney. Really hoping you get good news going forward.🤗


Thanks for setting this thread up with all the good feedback. Sorry if I am jumping onboard.


I'm very interested in Dave64's comment on high PSA after RP being very bad news and an indicator of lots of cancer away from the Prostate. Is this necessarily true?


My PSA after RP was 0.2 after first test, and rose to 0.5 after 3 months. Obviously this shocked and scared me. I had positive margins but still T3a. I also had lymph nodes removed with no cancer.


My oncologist indicated that the PSA could easily be generated by the positive margins and my subsequent RT/HT was with curative intent.


Just wondering if I am delusional. All candid feedback most welcome. 👍


Jim C

User
Posted 19 Dec 2023 at 22:19

Hi Jim, your oncologist will know more about your cancer than I will.


If you check ChrisJ's profile you will see his post op PSA was 1.5. Which I would describe as a high value. Your 0.2 is a moderately high value, clearly some cancer was left behind. Your PSA at diagnosis was 8.2 . Doing the maths, about 2.5% of your cancer was left behind, that could quite easily be what was left in the positive margin.


If your post op PSA had been 4.1 that would imply that as much cancer was left behind as was removed. A surgeon would not have missed that quantity of cancer if it was next to the prostate (he wouldn't have operated in the first place as it would be quite evident from scans that he could not remove all of it). If you have a high post op PSA (probably greater than 10% of your pre op PSA) then you have to wonder if the remaining cancer is in a distant part of the body.


The fact your lymph nodes were clear is another good sign to suggest your cancer hadn't gone too far.


 

Dave

User
Posted 19 Dec 2023 at 22:36

Thanks for the explanation Dave. 


I had a wee shiver up my spine after reading your post. I am very anxious about my condition every now and again.


Jim


👍🤗

 
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