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PSA found 12 months after RARP

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User
Posted 26 Feb 2020 at 19:46

Thanks to all who have commented on my Retzuis v RALP  conversation.

I would appreciate some more advice please, and have updated my Profile with all the latest news.

With a PSA of 0.12 on Feb 19th 2020 (and 0.1 on 18th Dec 2019) the consultant has recommended I start a course of Radiotherapy, aimed at the bed of my prostate. It is 12 months since my RARP.

If I have hormone therapy pre-radiotherapy is left up to me.......

I am in the process of booking a PMSA (prostate specific membrane antigen imaging scan) pre-treatment as I have read on this site that it may be useful to confirm the cancer has not spread (although not reliable at these levels).

Being only 51 (!) I am very keen to give myself as good a chance of "cure" as possible and would genuinely appreciate your help with advice on types of treatments available/ types of radiotherapy and doses/ anything else you feel relevant. 

I am quite happy with pointers to other conversations I should look at, or individuals who have relevant knowledge of the subject.

Sorry to ask for your help again.

Best Wishes

Mark

Edited by member 27 Feb 2020 at 06:00  | Reason: Typo

User
Posted 26 Feb 2020 at 22:32

Hi Mark,

Ask as many questions as you like.

I've no experience with this except what I've read.  If it was me I'd want the RT as soon as possible.  Whether to have hormones is interesting and I think I would.  Especially if the RT was a bit off.  Reducing the size of the lesion can be advantageous.  So whether to have hormones for say a month and then RT might be useful.  Then have hormones sfter the treatment for say 3 months to help fry the lesion as the RT works longer, I've read.

Also to be honest I'd not really want to know if it had spread until after.  Although if say it had spread locally perhaps that might help target the RT.  So that's another tough one.  The doctor must think it's in the bed as psa went down to undetectable then rose.  If it was elsewhere it wouldn't have gone that low. (I can't check on this device but your profile says it was <0.04 I think) 

Regards Peter

User
Posted 26 Feb 2020 at 23:51

Hi Mark, my primary treatment was brachy HDR, EBRT with HT.

HT started six months before RT. I think for me that was just because there was a long waiting list for the machines, but I have since read that, a reasonable amount of HT pre EBRT is a good thing. HT takes about three months as a minimum before it is really hitting the prostate. I am then on a further 18 months HT post EBRT, current thinking is that this is a good thing, though some thought is that six months shorter would give the same chance of killing the cancer with slightly fewer side effects.

The side effects of HT, I have not found too bad (remember I'm only on it 24 months in total, I would not be as happy if doctor said you're on HT for the rest of your life), so if Doctor says HT will improve your chances I would say yes, if you really can't stand the side effects, then you can always say "sorry, I'm stopping RT" and you will still have probably improved your chances of killing the cancer, even with three months worth. Immediate side effects are no libido, other possible side effects are loss of bone density and muscle mass. I don't know if you every really recover these to pre HT levels, but I don't think you will lose too much at your age with an 18-24 month course. 

Dave

User
Posted 27 Feb 2020 at 00:05
Anecdotally, the members here who have a recurrence after RT seem often to have been the ones who did not have HT. I think there is plenty of research to show that weakening the cancer by starving it for a few months pre-RT makes it more susceptible and therefore has a better outcome. There was a belief for a while that 3 years HT was best but it has been shown more recently that it is no more successful than just 18 months of HT.

John absolutely hated the hormone treatment and gave up after 9 months. That was 8 years ago and his PSA is happily bobbing along at or around 0.1 - he may never achieve full remission but he gave it the best he could within what was acceptable to him for QOL

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 27 Feb 2020 at 10:12

PSMA PET is a good idea. There's some research which shows that when men who were about to be treated with SRT were subject to a trial PSMA scan, a significant proportion had a change in treatment plan as a result (such as different targeting).

PSMA scans were traditionally regarded as reasonably reliable down to 0.5 PSA, but newer ones are 0.2 PSA. Given your low PSA, it would be better to use one of the newer more sensitive PSMA scans. These aren't hard cutoffs, and it will depend how concentrated or spread out the source is, and how close to the bladder and kidneys it is (these can 'white out' in scans as the waste isotope is expelled through them).

I would also request HT. You can always abandon it if you get really bad symptoms, but many people don't. There is some evidence that getting PSA as low as possible before starting RT is really beneficial, more so than the long period afterwards, which is why many people now find themselves on HT for 6 months before RT. Given you have so few cells, this will be hard to measure, but I would aim for 6 months HT before RT in your case (doing it by measuring PSA will be hard because you have so few cells to start with, and therefore 'undetectable' at this point will have little significance).

Wishing you all the best.

 

User
Posted 27 Feb 2020 at 10:55

Originally Posted by: Online Community Member

PSMA PET is a good idea.

Can you get Gallium-68 PET-PSMA scans on the NHS or are they normally Choline tracer based?

Cheers, John.

User
Posted 27 Feb 2020 at 17:03

Hi,
I had a PSMA scan at the Harley St Clinic in October this year pre HT & RT starting, it was negative and gives you, if nothing else, peace of mind. I was lucky that we have Private Health Insurance through my wife’s work, the insurance company were charged over £3,000 for it.
I was put on Hormone Treatment started last October with RT starting 10th Feb, I had my 13th fraction this afternoon. 7 left, and after 9 weeks on Bicalutamide (daily tablet) 150mg my PSA had reduced to 1.7 from 6 so it does work. I have been told to stay on it for 2 years.
I also had the SpaceOAR hydrogel spacer inserted also on the insurance, that was about £8000.
All the best,
Bryan

Edited by member 27 Feb 2020 at 17:34  | Reason: Spelling autocorrect

User
Posted 27 Feb 2020 at 17:19
If you started on HT last October, that would affect the reliability of the PSMA scan in January. If anyone is thinking about paying their own money for a Gallium PSMA, choline or flouro PET scan, do have it before you start on hormones and do remember that none of the tracers can pick up very small clusters of cancer cells.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 27 Feb 2020 at 17:33
Hi Lyn,

Correct, I checked my dates, had my PSMA in October prior to HT starting, it was January I had the rectal spacer put in. Will amend my post accordingly so as not to mislead anyone.

Thanks,

Bryan

User
Posted 01 Mar 2020 at 05:10

Originally Posted by: Online Community Member
Can you get Gallium-68 PET-PSMA scans on the NHS or are they normally Choline tracer based?

Paul Strickland Scanner Centre (at Mount Vernon) now does PSMA on the NHS, but most PET scans on the NHS will still be Choline.

Edited by member 01 Mar 2020 at 05:12  | Reason: Not specified

User
Posted 02 Mar 2020 at 23:21
I am not sure how you came to decide that an 18F D was the way to go - it is only at trial stage in the US and there is very little data yet. I don't think anywhere in the UK or Europe has a licence to trial it yet.

18F Choline is fairly standard in UK hospitals now - did you not consider that one?

Were you perhaps thinking of the F18 tracer instead (previously known as FACBC and licenced as Axumin? That was trialed at a number of UK hospitals and was licensed a couple of years ago - better results than choline but not quite as good as 68G.

I just wonder if you have confused 18F-D, 18F-C and F18?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 02 Mar 2020 at 23:23

The 18F DCFPyl scan has shown more cancer tumours than the 68 Gallium PSMA scan in the same preliminary cohort of men. It is being trialed in the USA (where it was developed by Marty Pomper and his team at John Hopkins), and also in Canada. I did contact the trial coordinator quite a time ago to check whether I might be eligible but was told it was not open to men from overseas. I think it would have created news if it was available in the UK. Some studies have been done in two hospitals in the The Netherlands. I read that royalties on the scan are due to John Hopkins.

Edited by member 04 Mar 2020 at 22:29  | Reason: spelling

Barry
Show Most Thanked Posts
User
Posted 26 Feb 2020 at 22:32

Hi Mark,

Ask as many questions as you like.

I've no experience with this except what I've read.  If it was me I'd want the RT as soon as possible.  Whether to have hormones is interesting and I think I would.  Especially if the RT was a bit off.  Reducing the size of the lesion can be advantageous.  So whether to have hormones for say a month and then RT might be useful.  Then have hormones sfter the treatment for say 3 months to help fry the lesion as the RT works longer, I've read.

Also to be honest I'd not really want to know if it had spread until after.  Although if say it had spread locally perhaps that might help target the RT.  So that's another tough one.  The doctor must think it's in the bed as psa went down to undetectable then rose.  If it was elsewhere it wouldn't have gone that low. (I can't check on this device but your profile says it was <0.04 I think) 

Regards Peter

User
Posted 26 Feb 2020 at 23:51

Hi Mark, my primary treatment was brachy HDR, EBRT with HT.

HT started six months before RT. I think for me that was just because there was a long waiting list for the machines, but I have since read that, a reasonable amount of HT pre EBRT is a good thing. HT takes about three months as a minimum before it is really hitting the prostate. I am then on a further 18 months HT post EBRT, current thinking is that this is a good thing, though some thought is that six months shorter would give the same chance of killing the cancer with slightly fewer side effects.

The side effects of HT, I have not found too bad (remember I'm only on it 24 months in total, I would not be as happy if doctor said you're on HT for the rest of your life), so if Doctor says HT will improve your chances I would say yes, if you really can't stand the side effects, then you can always say "sorry, I'm stopping RT" and you will still have probably improved your chances of killing the cancer, even with three months worth. Immediate side effects are no libido, other possible side effects are loss of bone density and muscle mass. I don't know if you every really recover these to pre HT levels, but I don't think you will lose too much at your age with an 18-24 month course. 

Dave

User
Posted 27 Feb 2020 at 00:05
Anecdotally, the members here who have a recurrence after RT seem often to have been the ones who did not have HT. I think there is plenty of research to show that weakening the cancer by starving it for a few months pre-RT makes it more susceptible and therefore has a better outcome. There was a belief for a while that 3 years HT was best but it has been shown more recently that it is no more successful than just 18 months of HT.

John absolutely hated the hormone treatment and gave up after 9 months. That was 8 years ago and his PSA is happily bobbing along at or around 0.1 - he may never achieve full remission but he gave it the best he could within what was acceptable to him for QOL

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 27 Feb 2020 at 10:12

PSMA PET is a good idea. There's some research which shows that when men who were about to be treated with SRT were subject to a trial PSMA scan, a significant proportion had a change in treatment plan as a result (such as different targeting).

PSMA scans were traditionally regarded as reasonably reliable down to 0.5 PSA, but newer ones are 0.2 PSA. Given your low PSA, it would be better to use one of the newer more sensitive PSMA scans. These aren't hard cutoffs, and it will depend how concentrated or spread out the source is, and how close to the bladder and kidneys it is (these can 'white out' in scans as the waste isotope is expelled through them).

I would also request HT. You can always abandon it if you get really bad symptoms, but many people don't. There is some evidence that getting PSA as low as possible before starting RT is really beneficial, more so than the long period afterwards, which is why many people now find themselves on HT for 6 months before RT. Given you have so few cells, this will be hard to measure, but I would aim for 6 months HT before RT in your case (doing it by measuring PSA will be hard because you have so few cells to start with, and therefore 'undetectable' at this point will have little significance).

Wishing you all the best.

 

User
Posted 27 Feb 2020 at 10:55

Originally Posted by: Online Community Member

PSMA PET is a good idea.

Can you get Gallium-68 PET-PSMA scans on the NHS or are they normally Choline tracer based?

Cheers, John.

User
Posted 27 Feb 2020 at 11:14
Thank you all for your replies.

I have asked if there is a 18F DCFPyL scanner that they have access to. If not it will be the Gallium - 68 but paid for by me.

User
Posted 27 Feb 2020 at 17:03

Hi,
I had a PSMA scan at the Harley St Clinic in October this year pre HT & RT starting, it was negative and gives you, if nothing else, peace of mind. I was lucky that we have Private Health Insurance through my wife’s work, the insurance company were charged over £3,000 for it.
I was put on Hormone Treatment started last October with RT starting 10th Feb, I had my 13th fraction this afternoon. 7 left, and after 9 weeks on Bicalutamide (daily tablet) 150mg my PSA had reduced to 1.7 from 6 so it does work. I have been told to stay on it for 2 years.
I also had the SpaceOAR hydrogel spacer inserted also on the insurance, that was about £8000.
All the best,
Bryan

Edited by member 27 Feb 2020 at 17:34  | Reason: Spelling autocorrect

User
Posted 27 Feb 2020 at 17:19
If you started on HT last October, that would affect the reliability of the PSMA scan in January. If anyone is thinking about paying their own money for a Gallium PSMA, choline or flouro PET scan, do have it before you start on hormones and do remember that none of the tracers can pick up very small clusters of cancer cells.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 27 Feb 2020 at 17:33
Hi Lyn,

Correct, I checked my dates, had my PSMA in October prior to HT starting, it was January I had the rectal spacer put in. Will amend my post accordingly so as not to mislead anyone.

Thanks,

Bryan

User
Posted 01 Mar 2020 at 05:10

Originally Posted by: Online Community Member
Can you get Gallium-68 PET-PSMA scans on the NHS or are they normally Choline tracer based?

Paul Strickland Scanner Centre (at Mount Vernon) now does PSMA on the NHS, but most PET scans on the NHS will still be Choline.

Edited by member 01 Mar 2020 at 05:12  | Reason: Not specified

User
Posted 02 Mar 2020 at 22:03
Today I have heard back from the Consultant Oncologist that 18F DCFPyL imaging is not available in the UK, indeed it is not in full "commercial" use at any hospital. I am just curious if that is the understanding of others on this site ?

I am still waiting for my appointment for the 68 Gallium Scan to come through.

User
Posted 02 Mar 2020 at 23:21
I am not sure how you came to decide that an 18F D was the way to go - it is only at trial stage in the US and there is very little data yet. I don't think anywhere in the UK or Europe has a licence to trial it yet.

18F Choline is fairly standard in UK hospitals now - did you not consider that one?

Were you perhaps thinking of the F18 tracer instead (previously known as FACBC and licenced as Axumin? That was trialed at a number of UK hospitals and was licensed a couple of years ago - better results than choline but not quite as good as 68G.

I just wonder if you have confused 18F-D, 18F-C and F18?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 02 Mar 2020 at 23:23

The 18F DCFPyl scan has shown more cancer tumours than the 68 Gallium PSMA scan in the same preliminary cohort of men. It is being trialed in the USA (where it was developed by Marty Pomper and his team at John Hopkins), and also in Canada. I did contact the trial coordinator quite a time ago to check whether I might be eligible but was told it was not open to men from overseas. I think it would have created news if it was available in the UK. Some studies have been done in two hospitals in the The Netherlands. I read that royalties on the scan are due to John Hopkins.

Edited by member 04 Mar 2020 at 22:29  | Reason: spelling

Barry
User
Posted 03 Mar 2020 at 19:36

Hi LynEyre

I was thinking about the 18 DCFPyl, which I had picked up on from an "Old Barry" post.

I am going to have the Gallium 68 PSMA scan as I think it stands a better chance of detecting any stray cancer cells than the NHS choline based scans.

It looks like my path is similar to your husbands early stages so far (hoping the outcome is the same as his), although the consultant was not that enthusiastic about starting on ADT treatment prior to radiotherapy.

Thank you for your involvement in mine, and many others posts - you are an encyclopedia of PC.  

User
Posted 03 Mar 2020 at 19:42

Thank you Barry for your comments, and for all your other posts.

I am booking my Gallium 68 scan tomorrow morning (missed their call this afternoon), and may well visit the castle whilst in the area !

User
Posted 12 Mar 2020 at 07:16
Here is what I have learnt about PMSA PET/CT (prostate-specific membrane antigen , positron emission tomography/ computerized tomography) scans over the last 10 days:

An NHS PET/CT scan was use F18 Choline and has now been surpassed by newer tracers.

Ga68 (Gallium) is a PSMA radioactive tracer that is available in the UK. There is another PSMA tracer, confusingly called F18, but I have not found a site that uses this in the UK. Below is a quote I received from a Dr in Germany which I think explains the difference between the two very well:

“the radioactive tracer, i mentioned in the last email, was not F18 Choline. This is an old radiopharmaceutical and , i agree with you, not so accurate as the PSMA tracer. I was referring to F18 PSMA tracer. It is actually the same molecule (PSMA) but the radioactive isotope is F18. This tracer does not leave the body through the kidneys and the bladder, like Ga68 PSMA tracer does, but through the liver and the gallbladder. That means that the great advantage of the nonurinary excretion, is the better evaluation of the prostate bed because in this case there is no radioactivity in the bladder that would confuse our results. According to many scientific articles from our department F18 PSMA is more sensitive and can detect local recurrence earlier and more accurate comparing to Ga68 PSMA.I strongly believe that in your case with a PSA of 0.12 the F18 PSMA tracer is more suitable comparing to Ga68 PSMA.”

From my research I agree with what the Dr from Heidelberg Hospital says, and I am provisionally booked in for a scan on the 30th March, cost 2,100 Euros.

However because of the Coronovirus I am concerned that I will not be allowed to travel to Germany by then, so I am having a Ga68 scan at the London Clinic today, cost £2,640. If the results are not medically conclusive and my consultant thinks it is ok to wait another two weeks I will then go to Germany.

I am self funding the scans and it is definitely worth ringing around, as the hospital my consultant initially referred me to (Windsor based) had a 4 week waiting list (and took 5 days to return my call) The Royal Marsden and Paul Strickland Scanner Centre quoted "within two weeks" and the London Clinic a week. Communicating with Germany via e-mail, and they are very efficient.

I will keep the site updated with my progress.

User
Posted 06 Oct 2023 at 15:23

How did it all go? This string kindov ended with a bang.

 
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