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User
Posted 10 Aug 2024 at 17:13

I had RALP in November 2021 (post op T3a, G3+4, clear margins, nerve sparing, perineural invasion) after which only my first PSA test was undetectable, detailed at <0.06. Following that, I bumped along at 0.06/0.08 for a while but in the last 16 months my PSA has risen steadily from 0.06 to 0.19 (see my profile) and I have now been referred to the West Herts oncology team. My initial consultation is on 20th August. I understand that 0.2 may sometimes be considered as a threshold for further investigation or perhaps treatment and likely I will be there very soon. 

I should appreciate any advice as to what I may expect to happen at or after the consultation (not much just yet?) and specific questions I should ask. 

Thanks, Peter

 

 

 

User
Posted 10 Aug 2024 at 20:57

Peter, I had a recurrence three years after surgery, I had the " very educated guess"salvage RT, that was all 7 years ago and some oncologists are now doing PSMA scans before SRT.

Thanks Chris 

User
Posted 10 Aug 2024 at 21:01

Sorry to hear that the surgeon's declaration of cured didn't live up to expectation. With a T3 diagnosis there is always a risk that some cells have strayed from the mothership and are lurking somewhere in the prostate bed or pelvic lymph nodes. Your PSA is only rising slowly so the outcome of your forthcoming consultation will probably be no immediate action.  Wait until the PSA rises a bit further to allow a good chance of a PSMA PET scan picking something up. Better to know where the cancer is and target it accordingly rather than applying a scatter gun approach. In my case the post RP PSMA PET scan only picked up questionable hot spots which were correctly ruled out as spurious. That leaves you with a best guess a best guess approach. My post op staging was T3b with one dissected lymph node showing positive. So my scatter gun approach was radiotherapy to the prostate bed and the surgical area where lymph nodes were removed. So far so good.

User
Posted 11 Aug 2024 at 08:49

I suppose what happens next depends largely on your oncology team's analysis of your post op histology and current rises in PSA. I think at some point, you're heading down the salvage radiotherapy (SRT) route. I had 20 fractions of SRT two years ago and found it quite easy apart from the daily grind of driving on the M25 to and from Mount Vernon. 

As for questions, I would ask:

At what point do you go for SRT?

Will it involve a scan?

Will it include HT?

How many fractions of radiotherapy?

Just prostate bed or wider?

Good luck, 

Kev.

User
Posted 11 Aug 2024 at 15:42

Hi Peter, 

0.12 was my third small rise, but my histology had showed a positive margin. When I asked my urologist about the next steps, he submitted referral to oncology straight away without another PSA test. 

I didn't have HT with SRT and I'm happy with that, time will tell.

I dabbled with the lanes to Mount Vernon a couple of times skirting Watford. From Jn 18 through Rickmansworth seems to back up a lot.

P.S. pretty sure we had the same surgeon.. he made a similar remark to me. 

Good luck. 

Kev. 

 

Edited by member 11 Aug 2024 at 15:44  | Reason: Typo

User
Posted 11 Aug 2024 at 16:47

Originally Posted by: Online Community Member

The surgeon who is now a Prof, Kev? 

 

Yes, nudge nudge, wink wink.

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User
Posted 10 Aug 2024 at 20:57

Peter, I had a recurrence three years after surgery, I had the " very educated guess"salvage RT, that was all 7 years ago and some oncologists are now doing PSMA scans before SRT.

Thanks Chris 

User
Posted 10 Aug 2024 at 21:01

Sorry to hear that the surgeon's declaration of cured didn't live up to expectation. With a T3 diagnosis there is always a risk that some cells have strayed from the mothership and are lurking somewhere in the prostate bed or pelvic lymph nodes. Your PSA is only rising slowly so the outcome of your forthcoming consultation will probably be no immediate action.  Wait until the PSA rises a bit further to allow a good chance of a PSMA PET scan picking something up. Better to know where the cancer is and target it accordingly rather than applying a scatter gun approach. In my case the post RP PSMA PET scan only picked up questionable hot spots which were correctly ruled out as spurious. That leaves you with a best guess a best guess approach. My post op staging was T3b with one dissected lymph node showing positive. So my scatter gun approach was radiotherapy to the prostate bed and the surgical area where lymph nodes were removed. So far so good.

User
Posted 11 Aug 2024 at 08:41

Chris and Chris

Thanks for your responses. Clearly you have both been through the mill. I always took my surgeon's declaration that I was 'cured' with a pinch of salt but am nevertheless disappointed that it seems I am not. I'll post an update after my consultation.

Peter

User
Posted 11 Aug 2024 at 08:49

I suppose what happens next depends largely on your oncology team's analysis of your post op histology and current rises in PSA. I think at some point, you're heading down the salvage radiotherapy (SRT) route. I had 20 fractions of SRT two years ago and found it quite easy apart from the daily grind of driving on the M25 to and from Mount Vernon. 

As for questions, I would ask:

At what point do you go for SRT?

Will it involve a scan?

Will it include HT?

How many fractions of radiotherapy?

Just prostate bed or wider?

Good luck, 

Kev.

User
Posted 11 Aug 2024 at 10:23

Thanks Kev, looks like your SRT was started at an early stage (0.12) and thankfully with success. If I go that route I would also be at Mount Vernon, although I'm only 25 minutes away and mostly down country lanes.

BTW, did you have HT? 

Cheers, Peter

Edited by member 11 Aug 2024 at 10:24  | Reason: Not specified

User
Posted 11 Aug 2024 at 15:42

Hi Peter, 

0.12 was my third small rise, but my histology had showed a positive margin. When I asked my urologist about the next steps, he submitted referral to oncology straight away without another PSA test. 

I didn't have HT with SRT and I'm happy with that, time will tell.

I dabbled with the lanes to Mount Vernon a couple of times skirting Watford. From Jn 18 through Rickmansworth seems to back up a lot.

P.S. pretty sure we had the same surgeon.. he made a similar remark to me. 

Good luck. 

Kev. 

 

Edited by member 11 Aug 2024 at 15:44  | Reason: Typo

User
Posted 11 Aug 2024 at 15:44

The surgeon who is now a Prof, Kev? 

User
Posted 11 Aug 2024 at 16:47

Originally Posted by: Online Community Member

The surgeon who is now a Prof, Kev? 

 

Yes, nudge nudge, wink wink.

 
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