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PSA rising post treatment ..... any advice?

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User
Posted 27 Oct 2021 at 05:04

Hi,

I am in New Zealand but follow this forum as it is more active than my local ones. Obviously treatment approaches may differ here but any advice welcomed.

Diagnosed 2015 G7.

Had prostatectomy in May 2017. Post surgery analysis returned G9(4+5).

Follow up RT in June/July 2018 with 12 mths ADT. Finished ADT in Apr 2019. Discharged from Oncology in mid 2019. With advice to get in touch if PSA reaches 2.

Testosterone only really back to normal in Apr 2020. PSA tests were tracking 《0.1 through until mid 2020.

Since then:

Aug 2020 0.1

Nov 2019 0.2

Feb 2021 0.6

May 2021 0.9

Jul 2021 1.2

Oct 2021 2.1.

The 1.2 reading n July was reviewed by oncology and rtheir esponse was cancer is steady, review in 12 mths.

When it reached the previously advised  2.1 threshold I visited GP. This GP has been an Oncology Registrar and she said that the hospital is unlikely to do any further treatment until PSA reaches 20. (Big diff between 2 and 20 although at current rate I could be there in 12 mths). GP has advised monthly PSA tests.

Obviously I am incurable but that doesn't mean terminal although G9 not good.

What does anyone think about waiting till PSA reaches 20. Should I make a fuss and demand some sort of action now?

Cheers

John

User
Posted 27 Oct 2021 at 05:04

Hi,

I am in New Zealand but follow this forum as it is more active than my local ones. Obviously treatment approaches may differ here but any advice welcomed.

Diagnosed 2015 G7.

Had prostatectomy in May 2017. Post surgery analysis returned G9(4+5).

Follow up RT in June/July 2018 with 12 mths ADT. Finished ADT in Apr 2019. Discharged from Oncology in mid 2019. With advice to get in touch if PSA reaches 2.

Testosterone only really back to normal in Apr 2020. PSA tests were tracking 《0.1 through until mid 2020.

Since then:

Aug 2020 0.1

Nov 2019 0.2

Feb 2021 0.6

May 2021 0.9

Jul 2021 1.2

Oct 2021 2.1.

The 1.2 reading n July was reviewed by oncology and rtheir esponse was cancer is steady, review in 12 mths.

When it reached the previously advised  2.1 threshold I visited GP. This GP has been an Oncology Registrar and she said that the hospital is unlikely to do any further treatment until PSA reaches 20. (Big diff between 2 and 20 although at current rate I could be there in 12 mths). GP has advised monthly PSA tests.

Obviously I am incurable but that doesn't mean terminal although G9 not good.

What does anyone think about waiting till PSA reaches 20. Should I make a fuss and demand some sort of action now?

Cheers

John

User
Posted 27 Oct 2021 at 16:43

I don't know how your health system works in NZ but if I had been told to wait to a PSA of 20 in the UK, my reaction would be to see whether I could get a PSMA scan at an alternative hospital within the NHS or failing that get one done privately. The longer you leave it and the higher the PSA goes, the greater the chance of finding a sufficient concentration of cancer cells to show on the scan. (If perhaps up to 3 tumors can be identified and they are away from the paths of RT you had previously, it may be possible to treat these individually with advanced RT). If you have more than 3 remote tumours you might be offered systemic treatment.

The question is at what PSA you opt for a PSMA scan. You could arrange for this soon and if nothing shows try again at say 3-4.

I know it's a fair flight from NZ to OZ but am aware PSMA scans there are far less costly than in we have to pay for privately in the UK. So if you are of a mind, you could compare prices with NZ. However, be aware that about 8% of men express insufficient PSMA for a reading to work, also your cancer cells may be too dispersed to be able to pin point or too numerous to treat individually.

Wish you well.

Edited by member 28 Oct 2021 at 00:00  | Reason: change wrong word

Barry
User
Posted 27 Oct 2021 at 16:47

Hi John,

I can only write from what I've read on here as I've only had the operation.   Some do wait until it reaches 20ish as the longer you don't have hormones the longer your body will respond to them.

Although some try to intervene with scans to find out how many lesions there are and if RT can be used to reduce them.   From what I've read if there are only a few lesions they might try but if there are a lot they won't.

At low psa you might need a PSMA scan which can detect very small lesions at psa as low as 0.2ish.   I don't know a lot about them but watched a YouTube video about scans a few weeks ago and they are about the best you can get, other scans only see larger lesions with psa much higher.

I don't know what your have in New Zealand I read such scans aren't easy to get in the UK.  I notice Old Barry has just posted and he's pretty switched on about these matters so I'll just say.  All the best, keep trying to get some intervention.   
Peter

Edited by member 27 Oct 2021 at 16:49  | Reason: Not specified

User
Posted 29 Oct 2021 at 07:55
PSMA scan just in case it's a single node or just a couple of spots they could treat with more RT or focally (not RT) if within the original RT treatment area.

PSMA scan would also show if you are "sensitive" so early leutinium could be a cutting edge option.

Otherwise I guess it's down to when you pull the trigger on Enzo, Chemo, HT or all three at once.

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User
Posted 27 Oct 2021 at 16:43

I don't know how your health system works in NZ but if I had been told to wait to a PSA of 20 in the UK, my reaction would be to see whether I could get a PSMA scan at an alternative hospital within the NHS or failing that get one done privately. The longer you leave it and the higher the PSA goes, the greater the chance of finding a sufficient concentration of cancer cells to show on the scan. (If perhaps up to 3 tumors can be identified and they are away from the paths of RT you had previously, it may be possible to treat these individually with advanced RT). If you have more than 3 remote tumours you might be offered systemic treatment.

The question is at what PSA you opt for a PSMA scan. You could arrange for this soon and if nothing shows try again at say 3-4.

I know it's a fair flight from NZ to OZ but am aware PSMA scans there are far less costly than in we have to pay for privately in the UK. So if you are of a mind, you could compare prices with NZ. However, be aware that about 8% of men express insufficient PSMA for a reading to work, also your cancer cells may be too dispersed to be able to pin point or too numerous to treat individually.

Wish you well.

Edited by member 28 Oct 2021 at 00:00  | Reason: change wrong word

Barry
User
Posted 27 Oct 2021 at 16:47

Hi John,

I can only write from what I've read on here as I've only had the operation.   Some do wait until it reaches 20ish as the longer you don't have hormones the longer your body will respond to them.

Although some try to intervene with scans to find out how many lesions there are and if RT can be used to reduce them.   From what I've read if there are only a few lesions they might try but if there are a lot they won't.

At low psa you might need a PSMA scan which can detect very small lesions at psa as low as 0.2ish.   I don't know a lot about them but watched a YouTube video about scans a few weeks ago and they are about the best you can get, other scans only see larger lesions with psa much higher.

I don't know what your have in New Zealand I read such scans aren't easy to get in the UK.  I notice Old Barry has just posted and he's pretty switched on about these matters so I'll just say.  All the best, keep trying to get some intervention.   
Peter

Edited by member 27 Oct 2021 at 16:49  | Reason: Not specified

User
Posted 29 Oct 2021 at 07:55
PSMA scan just in case it's a single node or just a couple of spots they could treat with more RT or focally (not RT) if within the original RT treatment area.

PSMA scan would also show if you are "sensitive" so early leutinium could be a cutting edge option.

Otherwise I guess it's down to when you pull the trigger on Enzo, Chemo, HT or all three at once.

User
Posted 29 Oct 2021 at 22:53

Thanks for the feedback and good to see its along the lines of my own thoughts.

All the best to everyone.

Regards

John

 
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