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PSMA Pet scan help.

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User
Posted 28 Aug 2023 at 12:18

Hi folks, I had a recent conversation with my Oncologist my PSA is on the rise but still only 0.7 so we are going to wait another 3 months once it gets above 2.0 she said we will send me for a CT scan, I said what about a Pet scan, she said no as I had already had 2 of these over the last 5yrs (roughly) and the wait list is now getting too long and the trust was only allowed to send 3 to 4 patient's a month. 😭.

Is it possible to go elsewhere in the NHS for this scan or am I going to have to find somewhere private and pay myself.

What's my best options, I'm in Gloucestershire but don't mind where I travel to. 

Many thanks 

 

User
Posted 28 Aug 2023 at 13:23
Things may be different now but when I was refused a PSMA scan on the NHS I looked to go private. Even doing this, 'The Paul Strickland Scanner Center' where I eventually got the scan required me as a prerequisite to get a referral by a 'Consultant' (not just my GP). There was some wait back then but supply problems and increased demand due to greater awareness of the scan may mean quite a wait. You will doubtless be aware that a number of these scans have to be aborted because it is not easy to achieve acceptable standard with the preparation injection for the scan. My first appointment had to be cancelled at the last moment due to the breakdown of the 'Generator' that served the London Hospitals/Facilities at the time.
Barry
User
Posted 28 Aug 2023 at 16:14

Kojack42, Nottingham city hospital have a PSMA scanning facility on site not sure if they produce the 1005 tracer on site.The waiting list there is quite long, which is why we used my wife's medical insurance. I had it done at the genesis centre in Oxford. The insurance company paid £4.1k for that, my follow up SABR treatment and consultations have cost an obscene amount of money. It has been said that there are 3 levels of charges ,NHS, self funded and insured.

Thanks Chris 

User
Posted 28 Aug 2023 at 20:04

Kojack42, Worcestershire NHS referred me to the Cobalt Centre for my PSMA scan. That was as a result of rising PSA following RP. There was no problem getting the referral but it was my only PSMA scan, so I can't say what their approach would be second time/third time around

User
Posted 28 Aug 2023 at 23:21

There seems to be quite a difference in attitude between centres that do PSMA scanning in-house, and those which have to send patients somewhere else. You might consider getting referred to a centre which has the PSMA equipment in-house for your ongoing treatment, rather than just for a scan, although that alone is no guarantee of getting one, but they might also have access to more advanced treatments.

User
Posted 29 Aug 2023 at 08:56

Thanks Chris it's not surprising to see 3 levels of prices, I just hope I can have the radiotherapy after on the NHS I can't afford to pay for that as well as the Pet Scan. 

 

Cheers 

User
Posted 29 Aug 2023 at 12:29
As previously mentioned, I had my PSMA scan privately at the Paul Strickland Scanning Center which is a separate Charity based facility within the grounds of Mount Vernon Hospital although there is some cooperation between the two and indeed a Consultant at the hospital interpreted the scan for me. Some hospitals are able to 'call the scan over' but a good idea to get it on a DVD so you can make it available to whoever you choose.

The scan cost circa £2400 in May 2018 which was about the going rate at the time, although the Royal Marsden were asking £3K+ then. There are several hospitals in the London area offering the PSMA scan but a few other hospitals now doing it around the UK. I think Andy's suggestion of placing yourself under the care for treatment where they also have PSMA scan provision is a good one. Just remember apart from treatment as and when required, there is further visits for checkups, MRI etc.

I had no problem having my PSMA scan privately but being under the aegis of a NHS hospital where I went on to have more treatment.

Barry
User
Posted 29 Aug 2023 at 13:34

Originally Posted by: Online Community Member

Hi Andy62 do you know of any centre's that have the PSMA pet scan facilities. 

I don't know the Gloucester area. Oxford and Birmingham both have PSMA PET scanners, but there may be nearer ones.

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User
Posted 28 Aug 2023 at 13:23
Things may be different now but when I was refused a PSMA scan on the NHS I looked to go private. Even doing this, 'The Paul Strickland Scanner Center' where I eventually got the scan required me as a prerequisite to get a referral by a 'Consultant' (not just my GP). There was some wait back then but supply problems and increased demand due to greater awareness of the scan may mean quite a wait. You will doubtless be aware that a number of these scans have to be aborted because it is not easy to achieve acceptable standard with the preparation injection for the scan. My first appointment had to be cancelled at the last moment due to the breakdown of the 'Generator' that served the London Hospitals/Facilities at the time.
Barry
User
Posted 28 Aug 2023 at 15:21

Hi Barry, I have spoken to the local cobalt centre and they said I could have the scan within 2 weeks of the referral, obviously not cheap @ £2300 so I was thinking was there another place in the UK I could get the scan under the NHS.

 

CHEERS THANKS 

User
Posted 28 Aug 2023 at 16:14

Kojack42, Nottingham city hospital have a PSMA scanning facility on site not sure if they produce the 1005 tracer on site.The waiting list there is quite long, which is why we used my wife's medical insurance. I had it done at the genesis centre in Oxford. The insurance company paid £4.1k for that, my follow up SABR treatment and consultations have cost an obscene amount of money. It has been said that there are 3 levels of charges ,NHS, self funded and insured.

Thanks Chris 

User
Posted 28 Aug 2023 at 20:04

Kojack42, Worcestershire NHS referred me to the Cobalt Centre for my PSMA scan. That was as a result of rising PSA following RP. There was no problem getting the referral but it was my only PSMA scan, so I can't say what their approach would be second time/third time around

User
Posted 28 Aug 2023 at 23:21

There seems to be quite a difference in attitude between centres that do PSMA scanning in-house, and those which have to send patients somewhere else. You might consider getting referred to a centre which has the PSMA equipment in-house for your ongoing treatment, rather than just for a scan, although that alone is no guarantee of getting one, but they might also have access to more advanced treatments.

User
Posted 29 Aug 2023 at 08:56

Thanks Chris it's not surprising to see 3 levels of prices, I just hope I can have the radiotherapy after on the NHS I can't afford to pay for that as well as the Pet Scan. 

 

Cheers 

User
Posted 29 Aug 2023 at 09:05

Hi Chris yep I have already had 2 pet scans. But I was never told I couldn't have anymore or there was a maximum. 

I was told I could only have the high dose Radiotherapy 3 times, not sure if it was due to costs or medical related reason.

I was told a month ago, that due to the NHS being so far behind treatment and wait list now been too long they was only allowed to send 3 to 4 people a month to have the Scan.

I think it's a combination of Covid and all these strikes has really messed up waiting times and trusts budgets. 

Cheers 

User
Posted 29 Aug 2023 at 09:07

Hi Andy62 do you know of any centre's that have the PSMA pet scan facilities. 

Many thanks 

Gary 

User
Posted 29 Aug 2023 at 12:29
As previously mentioned, I had my PSMA scan privately at the Paul Strickland Scanning Center which is a separate Charity based facility within the grounds of Mount Vernon Hospital although there is some cooperation between the two and indeed a Consultant at the hospital interpreted the scan for me. Some hospitals are able to 'call the scan over' but a good idea to get it on a DVD so you can make it available to whoever you choose.

The scan cost circa £2400 in May 2018 which was about the going rate at the time, although the Royal Marsden were asking £3K+ then. There are several hospitals in the London area offering the PSMA scan but a few other hospitals now doing it around the UK. I think Andy's suggestion of placing yourself under the care for treatment where they also have PSMA scan provision is a good one. Just remember apart from treatment as and when required, there is further visits for checkups, MRI etc.

I had no problem having my PSMA scan privately but being under the aegis of a NHS hospital where I went on to have more treatment.

Barry
User
Posted 29 Aug 2023 at 13:34

Originally Posted by: Online Community Member

Hi Andy62 do you know of any centre's that have the PSMA pet scan facilities. 

I don't know the Gloucester area. Oxford and Birmingham both have PSMA PET scanners, but there may be nearer ones.

 
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