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User
Posted 18 Aug 2022 at 19:07

Hi, I was diagnosed, age 58, with locally advanced prostate cancer in 2018. (I had asked 3 GPs when I was 55 for a PSA test and they all told me I was still too young) - Gleason Score 7 (4+3), PSA 8.14ng/ml. I had 20 sessions of RT to the prostate bed. My PSA then fell to 1.15ng/ml. PSA then continued to rise in April 2019 to 6.05ng/ml. I then had hormone therapy, (bicalutamide), and my PSA dropped to 0.77ng/ml. At this point, my consultant suggested I stop taking the bicalutamide to see if the PSA would rise again. In December 2020 my PSA had risen to 8.47ng/ml. I then went to the London Clinic for a Gallium68 PET Scan. The scan detected pelvic lymph node disease. I then had another 20 sessions of RT to the pelvic lymph nodes and my PSA dropped to 0.56ng/ml. I continued to take bicalutamide but my PSA continued to rise. In December 2021 I stopped taking bicalutamide and started Decapeptyl - 3 monthly injections. My PSA then started to rise again, 0.56, 0.75, 1.72, 2.70ng/ml. I recently had a further CT scan and bone scan and nothing has shown up. My consultant has now recommended another Gallium68 Pet Scan.  The consultant has said today that the cancer is castration resistant and something is going on somewhere. Is there anything else I should be pushing for? The current cost of a Gallium68 Pet Scan at the London Clinic is £3000. Is there anywhere else that you can have the same scan in the UK? 

Thanks

 

User
Posted 19 Aug 2022 at 17:52

Chris above is correct.  My Ga68 PSMA scan at the London Clinic picked up 2 small spots even though my PSA was 0.023.  I suppose I was lucky.  My Oncologist had to rewrite my salvage radiotherapy treatment field as a result of the scan to include these 2 areas.

For almost 4 years, my PSA has been >0.006.  I credit the Ga68 psma scan with saving my life.

I know that the scan has not always been of benefit to men with a much higher psa level than me.

 

User
Posted 19 Aug 2022 at 20:26

Thanks, for all your replies and advice, I will check this all out and go for the best options. I will let you all know what the outcomes are. Take care, J

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User
Posted 18 Aug 2022 at 22:44

Jeremy, I had the PSMA  F18 1007 scan at the city hospital in Nottingham. I know they take private patients, but no idea of cost. The hospital is about 20 miles from east Midlands airport.There are a few hotels fairly close to hospital. I did have my first appointment cancelled about eight hours before it was due.

https://www.inhealthgroup.com/location/nottingham-inhealth-specialist-imaging-centre/

Thanks Chris 

 

User
Posted 18 Aug 2022 at 23:00

I recently had a F18 PSMA scan in Blackrock clinic in Dublin.   

I also had a PET CT 18F PSMA 1007 scan at Alliance Medical in Cork University Hospital a few months ago.  As this was pre surgery insurance would not pay and it cost €2.5k.

Just some additional options for you.  Both take private clients. Best wishes. 

Edited by member 18 Aug 2022 at 23:01  | Reason: Not specified

User
Posted 19 Aug 2022 at 11:24

Many thanks everyone, I will look into these. Should a Gallium68 Pet scan pick up ant disease at a reading of 2.70ng/ml?

User
Posted 19 Aug 2022 at 12:40

Jeremy, we have had two extremes on here, at 0.023 a scan picked up hot spots and at 200 another guy's scan picked up nothing.

I think the above 0.023 scan was at the London clinic and I believe the 200 was also in London.

My f18 1007 scan picked up one 8mm tumor in a lymph node at 1.6.

Thanks Chris 

User
Posted 19 Aug 2022 at 12:53

Just to add. 

Prior to RP my PSA was 72 and my scan in Cork was all clear. 

Post RP my F18 PSMA scan in Blackrock picked up "small"  lymph node recurrence at a PSA of 0.8. 

As CC says it seems to be very variable although they are the best scans available and still a worthwhile diagnostic tool.   I am not fully versed on the differences between F18 and Ga type scans and if one is better than the other. 

User
Posted 19 Aug 2022 at 17:02
There is also 18F (FACBC) which is available at a small number of hospitals (slightly more than can offer PSMA). 18F is also slightly more stable and has a longer half life- therefore more easily transported so less risk of scan being cancelled on the day. Recent EU data indicates that PSMA Ga68 and 18F each have slight benefits and downsides in comparison with each other (performance at below 0.5, identifying mets in soft organs v mets in bone) so very little to choose between them but both are better than choline. Even so, in a dmsll number of cases, choline did identify mets that PSMA and FACBC missed. The ideal, therefore would be to have a nuclear bone scan, mpMRI, choline PET scan, Ga68 or F18 PSMA scsn and 18F scan ... just to be sure all information is amassed. In reality, the NHS couldn't afford it, it would create unnecessary delay in starting treatment and there may still be micromets that don't show up.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 19 Aug 2022 at 17:52

Chris above is correct.  My Ga68 PSMA scan at the London Clinic picked up 2 small spots even though my PSA was 0.023.  I suppose I was lucky.  My Oncologist had to rewrite my salvage radiotherapy treatment field as a result of the scan to include these 2 areas.

For almost 4 years, my PSA has been >0.006.  I credit the Ga68 psma scan with saving my life.

I know that the scan has not always been of benefit to men with a much higher psa level than me.

 

User
Posted 19 Aug 2022 at 20:26

Thanks, for all your replies and advice, I will check this all out and go for the best options. I will let you all know what the outcomes are. Take care, J

 
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