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PSA upward, Consultant Incoming

User
Posted 28 Nov 2024 at 10:09

Season's greetings all

PSA undetectable since RP in 2018, since 2019 regular 0.01 rises until today, 0.1

I have appointment with the consultant on the 10 th of December, and I know this hospital has a trigger of 0.2 for action

However, it's only going in one direction, and I wonder what questions to ask in the face of what looks like recurrence 

Have you or are you having a similar experience?

What questions would you ask?

What options are there ?

Thanks for any insight and wisdom

Best

Anthony 

User
Posted 28 Nov 2024 at 17:38

There is a new school of thought, not rushing into Salvage Radiation and HT just based on PSA but waiting until a PSMA PET shows something to target. It’s called PSA driven or image driven. The old .2 to .5 may not be the number to pull the trigger but certainly would depend how quickly it was going to increase over the .2 towards the .5 and getting a scan.  You do want to discuss with your oncologist. A scan at .1 may be too soon and might not point anything out.

User
Posted 28 Nov 2024 at 13:57

Hi Anthony, 

I would ask at what point you will be referred to oncology. Will your consultant wait until your PSA hits 0.2 before referring you, or will you be referred before then? I'm thinking that there maybe a wait for an appointment with oncology. 

You could ask about scans but that's probably a question for your oncologist. 

I was referred to oncology when I hit 0.12, I had positive a margin and my trust undoubtedly has a different process to yours.

Just to reassure you. I had salvage radiotherapy two years ago and my PSA is now undetectable. 

Good luck, 

Kev.

Edited by member 28 Nov 2024 at 14:06  | Reason: Added note

User
Posted 28 Nov 2024 at 15:34

Hi Anthony,

I've been in the same boat.   They kept telling me it would be psa 0.2 before anything happened.  Then last psa test in August it was unchanged at 0.11 but the nurse said I'd been asking to go to Oncology and there'd been a change and I could be referred to Oncology.   I got an appointment a month later with a Consultant.

She said a lot that was quite different than I'd been told before.  She offered to do Radiotherapy at 0.11 without a scan and gave her logic.   She also said I could have a psma test at another hospital at some point a bit later and before the 0.5 I'd been told before.  She also said that at the rate it's increasing it could carry on as is until I was 90 and they'd then put me on hormones.  She said the rate of change doesn't usually change that much.  I chose to wait until it got to around 0.2 and see if the rate of change was still slow as it could be 3yrs away and I very much prefer to have a scan first.   0.2 is a bit low for a scan but it depends what's there.

So the questions are more in your own court.  Is your rate of psa change stable, would you tolerate waiting, would you want a scan before the RT.  Do you want to take a chance and get rid of it now without a scan.  Those options might not be offered but you can ask.

The good thing is I'm now on Oncology's books and the Consultant has her own set of notes.  I now have my 4 month telephone appointments with Oncology Macmillan Nurses.

Good luck with it, let me know if you've any queries,  Regards Peter

p.s. your profile says psa = 1.0 not 0.1.

p.p.s.  I was told that RT without a scan has I think it was 53% success although the Consultant said her record was nearer 60%, I think it was 57%. 

 

Edited by member 28 Nov 2024 at 15:43  | Reason: as in p.s. p.p.s.

User
Posted 28 Nov 2024 at 22:57
Check my profile, depends which consultant you consult and even then they change their minds. Recent studies have shown no value (reduced death or metastasis) from going before 0.2.

You also need to consider whole pelvis or just prostate bed SRT, again 3 different consultants have given me 3 different answers!

PSA test on Monday for me.

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User
Posted 28 Nov 2024 at 13:57

Hi Anthony, 

I would ask at what point you will be referred to oncology. Will your consultant wait until your PSA hits 0.2 before referring you, or will you be referred before then? I'm thinking that there maybe a wait for an appointment with oncology. 

You could ask about scans but that's probably a question for your oncologist. 

I was referred to oncology when I hit 0.12, I had positive a margin and my trust undoubtedly has a different process to yours.

Just to reassure you. I had salvage radiotherapy two years ago and my PSA is now undetectable. 

Good luck, 

Kev.

Edited by member 28 Nov 2024 at 14:06  | Reason: Added note

User
Posted 28 Nov 2024 at 15:34

Hi Anthony,

I've been in the same boat.   They kept telling me it would be psa 0.2 before anything happened.  Then last psa test in August it was unchanged at 0.11 but the nurse said I'd been asking to go to Oncology and there'd been a change and I could be referred to Oncology.   I got an appointment a month later with a Consultant.

She said a lot that was quite different than I'd been told before.  She offered to do Radiotherapy at 0.11 without a scan and gave her logic.   She also said I could have a psma test at another hospital at some point a bit later and before the 0.5 I'd been told before.  She also said that at the rate it's increasing it could carry on as is until I was 90 and they'd then put me on hormones.  She said the rate of change doesn't usually change that much.  I chose to wait until it got to around 0.2 and see if the rate of change was still slow as it could be 3yrs away and I very much prefer to have a scan first.   0.2 is a bit low for a scan but it depends what's there.

So the questions are more in your own court.  Is your rate of psa change stable, would you tolerate waiting, would you want a scan before the RT.  Do you want to take a chance and get rid of it now without a scan.  Those options might not be offered but you can ask.

The good thing is I'm now on Oncology's books and the Consultant has her own set of notes.  I now have my 4 month telephone appointments with Oncology Macmillan Nurses.

Good luck with it, let me know if you've any queries,  Regards Peter

p.s. your profile says psa = 1.0 not 0.1.

p.p.s.  I was told that RT without a scan has I think it was 53% success although the Consultant said her record was nearer 60%, I think it was 57%. 

 

Edited by member 28 Nov 2024 at 15:43  | Reason: as in p.s. p.p.s.

User
Posted 28 Nov 2024 at 17:38

There is a new school of thought, not rushing into Salvage Radiation and HT just based on PSA but waiting until a PSMA PET shows something to target. It’s called PSA driven or image driven. The old .2 to .5 may not be the number to pull the trigger but certainly would depend how quickly it was going to increase over the .2 towards the .5 and getting a scan.  You do want to discuss with your oncologist. A scan at .1 may be too soon and might not point anything out.

User
Posted 28 Nov 2024 at 22:57
Check my profile, depends which consultant you consult and even then they change their minds. Recent studies have shown no value (reduced death or metastasis) from going before 0.2.

You also need to consider whole pelvis or just prostate bed SRT, again 3 different consultants have given me 3 different answers!

PSA test on Monday for me.

User
Posted 29 Nov 2024 at 10:23

Kev

Excellent replies,and gives some clarity before consultant appointment 

Also very reassuring re- outcomes

Thankyou so much

Keep well

A

Edited by member 29 Nov 2024 at 10:34  | Reason: Not specified

User
Posted 02 Dec 2024 at 16:22

Check out my bio but answers below in brief. 

Have you or are you having a similar experience?

Yes but mine went up much quicker after my removal not sure if this makes a difference. Otherwise we were remarkably similar. I did have a PET CT scan but I am not sure of their worth unless you have a reading of at least 0.5

My specialist treated after 3 consecutive rises above 0.1 even in the case that it stayed just below 0.2. I had targeted radiotherapy on the prostate bed. My side affects of treatment have been negligible and the biggest issues were mental and also practical getting to the radiotherapy 33 times Mon-Fri straight with empty bowels and full bladder. Main side effects I was warned about inc issues with bowels, issues with urination, ED, and tiredness.

If the RT has solved it then it was well worth it and significantly less invasive than removal for me. So far so good but like you I have been here before so remain prepared.

What questions would you ask?

When would I have treatment if it keeps on its current course?

What would that treatment be?

What options are there ?

We are all slightly different so i would go with the recommended option. My suspicion is that the likely recommendation with be 20 or 33 sessions of targeted RT probably just to the Prostate bed but maybe different. I am not sure if having the treatment over 33 sessions minimised the side effects but certainly I had very few and my specialist felt this was a possible reason.

 
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