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Advice Sought Rising PSA after RP

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User
Posted 08 Oct 2023 at 07:49

Hi

First time post, so please be gentle 😀

A bit of History - Had my first PSA in Spring 2018 after my Dad's came back high his was 39 at age 79

Mine was 13.9 aged 53, after a few cockups (pardon the pun!) on my tests, they did the Biopsies before MRI hence delaying treatment by 6 weeks. I had a Da Vinci RP privately in Sept 2018 (but at Arrowe Park)

First test Postop was at Clatterbridge came back as 0.01 so undetectable.

Lymph nodes were clear (took over 30) but did say left hand nerve had cancer creeping up it, so only partial nerve sparing.

Had PSA's then at local hospital, 4 in first and second years all 0.1 then every 6 months since all again 0.1 until this Sept, the 5 year test that came back 0.2! Clatterbridge asked me to go there, they gave 0.17

Nurse implied nothing will really be done/offered until 0.2

The Consultant via the nurse said he wanted to repeat their test in 6 weeks. So that's at the beginning of November. A few days later I have my call with the Consultant.

Guess there's three possible outcomes

1. It's risen again

2. It stays the same

3. It drops as was an anomaly?

Any suggestions on specific questions I should ask? (as guess will be 15mins tops?)

Given the comment about 0.2 is it likely I'll be offered any Scans? or should I have some privately (any suggested locations in NWest Cheshire welcome)

Should I push for SABR or similar? As surely the sooner the better???

 

All experience and suggestions most welcome 

Thanks

Phil

 

 

 

 

User
Posted 08 Oct 2023 at 15:14

Phil, roughly something like 20-30 percent of us have a recurrence after surgery. The rate of rise can supposedly indicate if the cells are in the prostate bed or likely to be elsewhere, a rapid rise after surgery will often result in salvage RT to the prostate bed. 

I had salvage RT to the prostate bed three years after surgery, the PSA did drop from 0.27 to 0.08, but later continued to rise.  Last year and again this year I had SABR treatment to two separate pelvic lymph nodes. I was refused a PSMA scan 6 years ago but they were not as reliable then.

The rise is quite small but any rise is unwelcome, another test will give a better idea of the trend. A PSMA is probably the way to go,if the PSA rises again but at low levels they are still less reliable. 

Might be worth a chat with one of this sites specialist nurses tomorrow, the number is at the top of the page.

Thanks Chris 

 

 

User
Posted 08 Oct 2023 at 19:38

My post-op PSA went from 0.014 to 0.015 to 0.019 to 0.023 during the year after my surgery.  I had a PSMA scan which miraculously showed two nodes involved.  SRT and 5 years later my PSA is <0.006.

 

The consultant will look at more than just your PSA.   For me, my positive margins, extra-capsular extention, peroneural invasion and pT3b staging were all contributors in deciding my treatment plan.

 

Get all your post-op info together and talk to one of the nurses on here so you go to your consultant's appointment well-armed.

User
Posted 09 Oct 2023 at 06:22
Thank you Ulsterman and colwickchris much appreciate the responses

I was told it was a T3N0M0 however it had broken out of the prostate capsule, I will try one of the nurses on here as that does sound a good idea, back on 2018 I wasn't offered RT as I already had Proctitis, however that appears to have burnt it self out, so guess I could have it now

Thank you both

Phil

User
Posted 09 Oct 2023 at 14:30
Hi

Called the support nurses here, have to say Heather was fantastic, really made it clear and took time to clarify the situation, possible options why paths maybe offered or not, feel more prepared for the call in a few weeks

So great suggestion to call them

Very much appreciated

And - Heather - if you read this, thank you!

Thanks

Phil

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User
Posted 08 Oct 2023 at 15:14

Phil, roughly something like 20-30 percent of us have a recurrence after surgery. The rate of rise can supposedly indicate if the cells are in the prostate bed or likely to be elsewhere, a rapid rise after surgery will often result in salvage RT to the prostate bed. 

I had salvage RT to the prostate bed three years after surgery, the PSA did drop from 0.27 to 0.08, but later continued to rise.  Last year and again this year I had SABR treatment to two separate pelvic lymph nodes. I was refused a PSMA scan 6 years ago but they were not as reliable then.

The rise is quite small but any rise is unwelcome, another test will give a better idea of the trend. A PSMA is probably the way to go,if the PSA rises again but at low levels they are still less reliable. 

Might be worth a chat with one of this sites specialist nurses tomorrow, the number is at the top of the page.

Thanks Chris 

 

 

User
Posted 08 Oct 2023 at 19:38

My post-op PSA went from 0.014 to 0.015 to 0.019 to 0.023 during the year after my surgery.  I had a PSMA scan which miraculously showed two nodes involved.  SRT and 5 years later my PSA is <0.006.

 

The consultant will look at more than just your PSA.   For me, my positive margins, extra-capsular extention, peroneural invasion and pT3b staging were all contributors in deciding my treatment plan.

 

Get all your post-op info together and talk to one of the nurses on here so you go to your consultant's appointment well-armed.

User
Posted 09 Oct 2023 at 06:22
Thank you Ulsterman and colwickchris much appreciate the responses

I was told it was a T3N0M0 however it had broken out of the prostate capsule, I will try one of the nurses on here as that does sound a good idea, back on 2018 I wasn't offered RT as I already had Proctitis, however that appears to have burnt it self out, so guess I could have it now

Thank you both

Phil

User
Posted 09 Oct 2023 at 14:30
Hi

Called the support nurses here, have to say Heather was fantastic, really made it clear and took time to clarify the situation, possible options why paths maybe offered or not, feel more prepared for the call in a few weeks

So great suggestion to call them

Very much appreciated

And - Heather - if you read this, thank you!

Thanks

Phil

 
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