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PSA now detectable

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User
Posted 06 Sep 2024 at 20:19

Just over four years since husband’s RARP and approaching four years since adjuvant  RT. PSA has been <0.1 but today’s is 0.2 (6 months since last check).

Routine six monthly check up with oncology nurse next week - what might we expect? HT?

Thanks 🌹

Edited by member 09 Sep 2024 at 20:36  | Reason: Wrote salvage instead of adjuvant

User
Posted 07 Sep 2024 at 11:06

I would want a PSMA PET scan at some point to see what is going on. So ask when they will do that. Hopefully it will be a single node that can be zapped, if not and having watched many Dr Kwon videos on U tube and given your man is only 59? And had tertiary G5 I would want to know if you should be hitting it with everything chemo, HT and 2nd line HT, "up front" with the intention of intermittent therapy later.

Edited by member 07 Sep 2024 at 11:07  | Reason: Not specified

User
Posted 07 Sep 2024 at 17:07

Lexi, sorry to hear this news. I was in a similar position a few years ago and I was heading for HT for life. The oncologist changed his thinking and it was PSMA scans and SABR treatment to single lymph nodes. There is a limit to what the NHS will treat and private SABR treatment is very expensive.

I am also a fan of Dr Kwon,and even if people are not, his videos are quite interesting.

Thanks Chris 

 

User
Posted 07 Sep 2024 at 17:50

Yes, next step is a PSMA PET scan to find the cancer with a view to using SABR on it if possible. They might not do this scan until PSA is 0.5 (or maybe even higher). They shouldn't put you on hormone therapy before doing that. If your hospital can't do PSMA PET scans or SABR, then you might consider getting referred to one which does.

Also, switch to 3-monthly PSA tests.

User
Posted 07 Sep 2024 at 21:21

Hi, Sorry to read that.   This might be answerable by someone on here but going from <0.1 to 0.2.  Could it be that they only measure to one digit.   I would have thought it might be say 0.16 or something to 2 digits. If the increase was less it could make a difference. 

If it's only one digit a reading of 0.2 could be anything from 0.16 to 0.25 or 0.11 to 0,2, I don't know how they do it.  As said elsewhere 3 monthly psa readings should be done.  But I'd prefer readings to 2 digits and perhaps a repeat test now to check it's correct.

User
Posted 08 Sep 2024 at 11:48

Hi Lexi

I had surgery in 2020 and all seemed fine until January this year when my PSA had risen to 1.2. My GP did not pick up on this and I had to make a fuss to get an urgent referral to oncology. I was sent for a PET scan and this found cancer cells in my pelvic area. I was referred for SABR treatment which was agreed and I had 3 treatments in a week back in May. I have suffered a bit  with fatigue which is normal after radiotherapy. I had a PSA test in August and it has now gone down to 0.42 which is good news. My oncologist told me that it may go down further. Regular 3 monthly PSA tests and as long it doesn't start to rise again then all is well. If it does rise then it will be a further scan and possibly more SABR. Fingers crossed it won't come to that!

I wish you and your husband well.

Edited by member 08 Sep 2024 at 11:50  | Reason: typo

User
Posted 10 Sep 2024 at 13:41
Lexi

I’m in this position: following a RARP in December 2022 my PSA rose to 0.2. The specialist nurses referred me back into the system immediately. My oncologist told me a PET scan wouldn’t achieve anything as the cancer cells would be too small to be picked up.

I’ve had 20 fractions of radiotherapy and was put on hormone treatment for 6 months. Following a telephone consultation yesterday the hormone treatment will be continued for 2 years as the current thinking is that the longer period will reduce the risk of a further recurrence.

The radiotherapy is not an issue and I’m coping well with the hormone treatment with few side effects.

The first point of call has to be your oncologist who will advise, but at this stage this is very treatable.

User
Posted 11 Sep 2024 at 13:16

Husband had chat with oncology CNS which was scheduled routinely before knowing of the rise in PSA.

She's referred him back to Oncologist who will see him in approx 3 months and he's arranging PSMA scan.

User
Posted 11 Sep 2024 at 16:59
Excellent, now do you best to forget about PC for a few weeks.
User
Posted 08 Oct 2024 at 12:01

Lexi, I don't think our hospital will do a  PSMA scan with a PSA below 0.3. If I understand your back posts, his PSA was only 0.2.

Thanks Chris 

 

User
Posted 08 Oct 2024 at 13:27

Lexi, it sounds like they don't offer any curative options at this point. I would check if that is the case, and then consider transferring to somewhere which does. Obviously, I don't know his medical history, state of health, etc, but the standard of care at this point would be to check for mets (which can only really be done with a PSMA PET scan), and if it's no more than 3 (and providing they're not in some less likely places), to offer SABR. Hospitals which don't have PSMA PET scanners or SABR capability usually don't refer you to somewhere which can, but (if you live in England) you can get referred to any NHS hospital in England which is prepared to take you.

User
Posted 08 Oct 2024 at 15:18

Lexi, the wait until December may mean the PSA will be higher and give a better chance of PSMA detection.

After my salvage RT, I was heading for the lifetime of HT, but due to advances in PSMA, my oncologist had a change of mind and has gone down the PSMA/SABR route.

You say the oncologist was referring him for a PSMA, in view of Andrew's comments, does your hospital have PSMA facilities.

Thanks Chris 

User
Posted 08 Oct 2024 at 22:22

Lexi, my oncologist was described as a bit of a maverick. PSMA and SABR to local hot spots is probably a more modern approach.

Agree the single low PSA does not meet the criteria for PSMA scan. 

Ulstermans PSMA scan can found something at ten times lower , CJ did not spot anything untill it was around 200 ?  Not sure about paying for a scan at this point. My nurse said the original plan was to wait for the PSA to reach 1 , the oncologist had a higher figure in mind. PSA velocity or reaching 3 seems to be the factors to decide my next step.

Thanks Chris 

 

 

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User
Posted 07 Sep 2024 at 11:06

I would want a PSMA PET scan at some point to see what is going on. So ask when they will do that. Hopefully it will be a single node that can be zapped, if not and having watched many Dr Kwon videos on U tube and given your man is only 59? And had tertiary G5 I would want to know if you should be hitting it with everything chemo, HT and 2nd line HT, "up front" with the intention of intermittent therapy later.

Edited by member 07 Sep 2024 at 11:07  | Reason: Not specified

User
Posted 07 Sep 2024 at 11:57
Hi and thanks for your reply. He’s now a fit 64 year old and still working (59 when diagnosed).

Will have a look at some of those videos.

User
Posted 07 Sep 2024 at 17:07

Lexi, sorry to hear this news. I was in a similar position a few years ago and I was heading for HT for life. The oncologist changed his thinking and it was PSMA scans and SABR treatment to single lymph nodes. There is a limit to what the NHS will treat and private SABR treatment is very expensive.

I am also a fan of Dr Kwon,and even if people are not, his videos are quite interesting.

Thanks Chris 

 

User
Posted 07 Sep 2024 at 17:50

Yes, next step is a PSMA PET scan to find the cancer with a view to using SABR on it if possible. They might not do this scan until PSA is 0.5 (or maybe even higher). They shouldn't put you on hormone therapy before doing that. If your hospital can't do PSMA PET scans or SABR, then you might consider getting referred to one which does.

Also, switch to 3-monthly PSA tests.

User
Posted 07 Sep 2024 at 21:21

Hi, Sorry to read that.   This might be answerable by someone on here but going from <0.1 to 0.2.  Could it be that they only measure to one digit.   I would have thought it might be say 0.16 or something to 2 digits. If the increase was less it could make a difference. 

If it's only one digit a reading of 0.2 could be anything from 0.16 to 0.25 or 0.11 to 0,2, I don't know how they do it.  As said elsewhere 3 monthly psa readings should be done.  But I'd prefer readings to 2 digits and perhaps a repeat test now to check it's correct.

User
Posted 08 Sep 2024 at 11:48

Hi Lexi

I had surgery in 2020 and all seemed fine until January this year when my PSA had risen to 1.2. My GP did not pick up on this and I had to make a fuss to get an urgent referral to oncology. I was sent for a PET scan and this found cancer cells in my pelvic area. I was referred for SABR treatment which was agreed and I had 3 treatments in a week back in May. I have suffered a bit  with fatigue which is normal after radiotherapy. I had a PSA test in August and it has now gone down to 0.42 which is good news. My oncologist told me that it may go down further. Regular 3 monthly PSA tests and as long it doesn't start to rise again then all is well. If it does rise then it will be a further scan and possibly more SABR. Fingers crossed it won't come to that!

I wish you and your husband well.

Edited by member 08 Sep 2024 at 11:50  | Reason: typo

User
Posted 10 Sep 2024 at 13:41
Lexi

I’m in this position: following a RARP in December 2022 my PSA rose to 0.2. The specialist nurses referred me back into the system immediately. My oncologist told me a PET scan wouldn’t achieve anything as the cancer cells would be too small to be picked up.

I’ve had 20 fractions of radiotherapy and was put on hormone treatment for 6 months. Following a telephone consultation yesterday the hormone treatment will be continued for 2 years as the current thinking is that the longer period will reduce the risk of a further recurrence.

The radiotherapy is not an issue and I’m coping well with the hormone treatment with few side effects.

The first point of call has to be your oncologist who will advise, but at this stage this is very treatable.

User
Posted 10 Sep 2024 at 14:48
Glad to hear you coped well with RT Probbo.

My husband had 33 fractions not long after his surgery due to PSA being 0.2 and having positive margins.

We've had 4yrs of been undetectable.

Will ask about PSMA scan, SABR treatment.

Thanks for all your valuable advice and replies.

He has Oncology nurse tomorrow who will hopefully be able to access the repeat PSA taken yesterday. My husband is so disappointed and downtrodden all weekend.

User
Posted 11 Sep 2024 at 13:16

Husband had chat with oncology CNS which was scheduled routinely before knowing of the rise in PSA.

She's referred him back to Oncologist who will see him in approx 3 months and he's arranging PSMA scan.

User
Posted 11 Sep 2024 at 16:59
Excellent, now do you best to forget about PC for a few weeks.
User
Posted 08 Oct 2024 at 11:04

Hi Andy 

Husband has been denied a PSMA scan as "doesn't meet criteria". This has obviously come from whoever vets the request in radiology.

Oncologist has asked for MRI .

What are your thoughts please?

Thanks 

User
Posted 08 Oct 2024 at 12:01

Lexi, I don't think our hospital will do a  PSMA scan with a PSA below 0.3. If I understand your back posts, his PSA was only 0.2.

Thanks Chris 

 

User
Posted 08 Oct 2024 at 12:09

That's right Chris. They said doesn't meet criteria as not for surgery or RT which is obviously totally wrong. If they'd of said because PSA not high enough I would accept that.

He's to get an MRI of pelvis only which also concerns me.

User
Posted 08 Oct 2024 at 13:27

Lexi, it sounds like they don't offer any curative options at this point. I would check if that is the case, and then consider transferring to somewhere which does. Obviously, I don't know his medical history, state of health, etc, but the standard of care at this point would be to check for mets (which can only really be done with a PSMA PET scan), and if it's no more than 3 (and providing they're not in some less likely places), to offer SABR. Hospitals which don't have PSMA PET scanners or SABR capability usually don't refer you to somewhere which can, but (if you live in England) you can get referred to any NHS hospital in England which is prepared to take you.

User
Posted 08 Oct 2024 at 14:04

He's a very fit and active 64yr old. Surely a pelvic MRI is a waste of time??

Should we wait until December until we speak to oncologist or is there something else we can do now? 

Edited by member 08 Oct 2024 at 14:10  | Reason: Not specified

User
Posted 08 Oct 2024 at 15:18

Lexi, the wait until December may mean the PSA will be higher and give a better chance of PSMA detection.

After my salvage RT, I was heading for the lifetime of HT, but due to advances in PSMA, my oncologist had a change of mind and has gone down the PSMA/SABR route.

You say the oncologist was referring him for a PSMA, in view of Andrew's comments, does your hospital have PSMA facilities.

Thanks Chris 

User
Posted 08 Oct 2024 at 15:35

Yes they do have PSMA scan facilities. It's a specific cancer specialising hospital in Glasgow.

If it comes to it we'll go for a private scan once we speak to Oncologist.

I'm concerned at being told we don't fit criteria as not for surgery/RT. Makes me think the referral hasn't included correct information. That said the oncologist is going along with the decision.

User
Posted 08 Oct 2024 at 15:47

I'm not familiar with exactly what treatments are offered in Scotland in this situation. The Scottish Medicines Commission has different guidance than NICE.

User
Posted 08 Oct 2024 at 21:33

CNS sent me the rejection reason:-

PSMA PET is only indicated for patients with BCR where salvage treatment (surgery/RT/cryotherapy is being actively considered. It is not indicated to decide on use of HRT post salvage.

she also sent me the criteria list and the most obvious one, is “should have at least two consecutive PSA levels of 0.2 or greater” My husband only has one which makes me question why the oncologist requested the scan so early.

Edited by member 08 Oct 2024 at 21:50  | Reason: Not specified

User
Posted 08 Oct 2024 at 22:22

Lexi, my oncologist was described as a bit of a maverick. PSMA and SABR to local hot spots is probably a more modern approach.

Agree the single low PSA does not meet the criteria for PSMA scan. 

Ulstermans PSMA scan can found something at ten times lower , CJ did not spot anything untill it was around 200 ?  Not sure about paying for a scan at this point. My nurse said the original plan was to wait for the PSA to reach 1 , the oncologist had a higher figure in mind. PSA velocity or reaching 3 seems to be the factors to decide my next step.

Thanks Chris 

 

 

 
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