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PSA climbing 2 years after Prostatectomy

User
Posted 13 Dec 2023 at 21:29

I had surgery after a PSA of 7.8; Gleason 3+4; T2c M0 N0.  I was advised I needed active treatment.  I spoke to quite a few people, went into the options and surgery seemed the best option - which I had in August 2020.

It has, up to the last year, gone well, (apart from ED, I'm tolerating that situation).  For the first 2 years follow-ups, my PSA has been 0.014, below measurable level. But from the end of 2022, it has started to climb. The last PSA was 0.092, up from 0.053 in 5 months.  My PSA is still under the 0.2 level when my local team tell me I will be referred to Oncology.  

The latest PSA increase has caused me concern, the trend does not sound good to me! I've had 4 consecutive tests with PSA rising each time, the last increase seems substantial.

Should I be concerned? What could be going on? 

I'm pressing my local Urology team for some options.  I see there have been other posts about similar situations. I'd be interested in any advice. TIA.

User
Posted 14 Dec 2023 at 10:16

I wouldnt accept this. At 0.1 I pushed for an oncology referral, by the time that came around I was at 0.2. Subsequent PSMA showed 1cm region in prostate bed, so got it zapped.

User
Posted 14 Dec 2023 at 10:45

Unfortunately, I have found I needed to push for action all the way along and self manage my records. Don't assume anyone is actively monitoring your case (or even has the whole picture).

User
Posted 14 Dec 2023 at 14:14

Adam, it might be a good idea to call the nurses on this site and have a chat,the number is at the top of the page. They are absolutely brilliant,a two conversation can sometimes be very beneficial. 

Thanks Chris 

User
Posted 15 Dec 2023 at 14:48

No ‘mechanism’ as you describe. Recurrent PC in prostate bed post-surgery is from cells left behind. There may be low level - too low to immediately give PSA readings. But they multiply over time and after a period the PSA level begins to register.
For some folks there is an immediate detectable PSA level after surgery, prompting treatment.

 

User
Posted 13 Dec 2023 at 22:35
Adam, I am one of many here who have been through the same. It does feel a bit concerning waiting for when the PSA finally reaches the 0.2 level for action. Good luck!

I was reassured by a paper I found that analysed a whole lot of patients and found the likelihood of metastasis in that situation is low providing the PSA remains below 0.45 and the doubling time is more than 8 months. Hopefully that is also true for you.

User
Posted 13 Dec 2023 at 23:23

Hello mate.

I'm sorry that you had a slight rise, and I hope that the anxiety it must cause is manageable. I can't add anything really constructive other than my Trust use 0.2 as a trigger for possible further treatment or two or three consecutive rises. I'm not sure about doubling times.

It's weird isn't it, that we're all so concerned about such miniscule numbers.

I wish you all the best.

Adrian

Edited by member 13 Dec 2023 at 23:25  | Reason: Not specified

User
Posted 14 Dec 2023 at 08:28
I would insist on seeing oncology now, a lot depends on your particular risk as to how early or late you have salvage treatment.

Your GP or Urologist are not qualified to judge.

User
Posted 14 Dec 2023 at 10:05
I'm in the same situation except mine has risen to 0.12 in 6 months from a post op PSA of 0 - but my consultant has told me not to worry as they won't do anything until it gets past 0.2 at which point they will look at SRT and that the PSA is 'far too low' for anything to show up on a PET scan (my bone scintigraphy prior to the RP was clear).

So just on 3 monthly PSA tests now.

It confirms what I have been told many times, that this form of cancer is quite slow growing.

User
Posted 14 Dec 2023 at 10:41

Thanks for your comments....I guess the experts know what they are doing - I bloody hope so! 

Other people have it much worse, so I probably shouldn't complain.

 The annoying thing is they tell you need action, you go through choosing your route, have a pretty major operation, with all the after effects and then, a couple of years on, you are back researching prostate cancer instead of playing golf!  (not a game I play actually, but you get my point)

I do feel better for letting some steam off! Highly recommended!

User
Posted 14 Dec 2023 at 12:46

Probably being beaten to it as I type, but…

Yes, SRT Salvage Radiation Therapy/Treatment.
PSMA is prostate specific membrane antigen. These little antigens sit on the outside membrane of PC cells. It is detected using an advanced PET scan (another acronym for you to google!) with a tracer that rushes to it. Very good for detecting where any cancer is; but not so accurate in determining quantity/volume. 
After surgery, pathology is performed on the removed prostate - the gland is covered in ink and then fine sections taken. Close analysis can determine if the outer edges are intact or have been nicked - either by leaving some tissue or by the surgeon during removal. Nerve sparing is a more difficult surgery as they try to optimise removal but not damage nerves. Request the pathology report. Your surgeon should have followed up and let you know if there were any “positive margins” (tissue left behind - may be malignant so increased risk) or “negative margins” (no nicking of the outer membranes (all removed). 

User
Posted 14 Dec 2023 at 14:38

Originally Posted by: Online Community Member

Adam, it might be a good idea to call the nurses on this site and have a chat,the number is at the top of the page. They are absolutely brilliant,a two conversation can sometimes be very beneficial. 

Thanks Chris 

Hi Chris, yes this is on my to-do list. Thanks for the suggestion.

User
Posted 15 Dec 2023 at 13:24
Does anyone know the mechanism by which the cancer cells or whatever, the bad stuff, get to the prostate bed, to cause the rise in PSA, post RP, after removal.

How do you get 'undetectable' level for a spell and then a period of PSA increase. No one I have spoken to seems able to give a decent explanation

TIA

User
Posted 15 Dec 2023 at 14:53

Can recommend Patrick Walsh’s Guide to surviving Pc. Easy read, everything you need to know.

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User
Posted 13 Dec 2023 at 22:35
Adam, I am one of many here who have been through the same. It does feel a bit concerning waiting for when the PSA finally reaches the 0.2 level for action. Good luck!

I was reassured by a paper I found that analysed a whole lot of patients and found the likelihood of metastasis in that situation is low providing the PSA remains below 0.45 and the doubling time is more than 8 months. Hopefully that is also true for you.

User
Posted 13 Dec 2023 at 23:23

Hello mate.

I'm sorry that you had a slight rise, and I hope that the anxiety it must cause is manageable. I can't add anything really constructive other than my Trust use 0.2 as a trigger for possible further treatment or two or three consecutive rises. I'm not sure about doubling times.

It's weird isn't it, that we're all so concerned about such miniscule numbers.

I wish you all the best.

Adrian

Edited by member 13 Dec 2023 at 23:25  | Reason: Not specified

User
Posted 14 Dec 2023 at 01:41

Adam, I was pretty much in the same situation 7 or 8 years ago and around a third of surgery patients get a recurrence. Make sure you keep an eye on the PSA and get a referral to oncology as you start approaching 0.2. 

Thanks Chris 

 

User
Posted 14 Dec 2023 at 08:28
I would insist on seeing oncology now, a lot depends on your particular risk as to how early or late you have salvage treatment.

Your GP or Urologist are not qualified to judge.

User
Posted 14 Dec 2023 at 10:05
I'm in the same situation except mine has risen to 0.12 in 6 months from a post op PSA of 0 - but my consultant has told me not to worry as they won't do anything until it gets past 0.2 at which point they will look at SRT and that the PSA is 'far too low' for anything to show up on a PET scan (my bone scintigraphy prior to the RP was clear).

So just on 3 monthly PSA tests now.

It confirms what I have been told many times, that this form of cancer is quite slow growing.

User
Posted 14 Dec 2023 at 10:16

I wouldnt accept this. At 0.1 I pushed for an oncology referral, by the time that came around I was at 0.2. Subsequent PSMA showed 1cm region in prostate bed, so got it zapped.

User
Posted 14 Dec 2023 at 10:41

Thanks for your comments....I guess the experts know what they are doing - I bloody hope so! 

Other people have it much worse, so I probably shouldn't complain.

 The annoying thing is they tell you need action, you go through choosing your route, have a pretty major operation, with all the after effects and then, a couple of years on, you are back researching prostate cancer instead of playing golf!  (not a game I play actually, but you get my point)

I do feel better for letting some steam off! Highly recommended!

User
Posted 14 Dec 2023 at 10:45

Unfortunately, I have found I needed to push for action all the way along and self manage my records. Don't assume anyone is actively monitoring your case (or even has the whole picture).

User
Posted 14 Dec 2023 at 11:31
Hi All,

Thanks again for tips and suggestions.

Could someone confirm what these abbreviations pls, excuse my ignorance.....SRT must be Salvage Radio Therapy??? What is PSMA?

I'd really like to know how, if the cancer was contained in the prostate and the prostate was removed, something detectable, I guess the cancer, can turn up in the prostate 'bed', whatever that is. The surgery is 'nerve sparing' is this the problem? is too much left behind?

User
Posted 14 Dec 2023 at 12:46

Probably being beaten to it as I type, but…

Yes, SRT Salvage Radiation Therapy/Treatment.
PSMA is prostate specific membrane antigen. These little antigens sit on the outside membrane of PC cells. It is detected using an advanced PET scan (another acronym for you to google!) with a tracer that rushes to it. Very good for detecting where any cancer is; but not so accurate in determining quantity/volume. 
After surgery, pathology is performed on the removed prostate - the gland is covered in ink and then fine sections taken. Close analysis can determine if the outer edges are intact or have been nicked - either by leaving some tissue or by the surgeon during removal. Nerve sparing is a more difficult surgery as they try to optimise removal but not damage nerves. Request the pathology report. Your surgeon should have followed up and let you know if there were any “positive margins” (tissue left behind - may be malignant so increased risk) or “negative margins” (no nicking of the outer membranes (all removed). 

User
Posted 14 Dec 2023 at 14:14

Adam, it might be a good idea to call the nurses on this site and have a chat,the number is at the top of the page. They are absolutely brilliant,a two conversation can sometimes be very beneficial. 

Thanks Chris 

User
Posted 14 Dec 2023 at 14:38

Originally Posted by: Online Community Member

Adam, it might be a good idea to call the nurses on this site and have a chat,the number is at the top of the page. They are absolutely brilliant,a two conversation can sometimes be very beneficial. 

Thanks Chris 

Hi Chris, yes this is on my to-do list. Thanks for the suggestion.

User
Posted 15 Dec 2023 at 13:24
Does anyone know the mechanism by which the cancer cells or whatever, the bad stuff, get to the prostate bed, to cause the rise in PSA, post RP, after removal.

How do you get 'undetectable' level for a spell and then a period of PSA increase. No one I have spoken to seems able to give a decent explanation

TIA

User
Posted 15 Dec 2023 at 14:48

No ‘mechanism’ as you describe. Recurrent PC in prostate bed post-surgery is from cells left behind. There may be low level - too low to immediately give PSA readings. But they multiply over time and after a period the PSA level begins to register.
For some folks there is an immediate detectable PSA level after surgery, prompting treatment.

 

User
Posted 15 Dec 2023 at 14:53

Can recommend Patrick Walsh’s Guide to surviving Pc. Easy read, everything you need to know.

 
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