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Location of MpMRI in the UK

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User
Posted 22 Jan 2017 at 12:42

Fantastic work done by Prostate Cancer UK using Freedom of Information to find out where the MpMRI scanners actually are in the Uk ( 18th January 2917)

https://public.tableau.com/profile/ali.cooper#!/vizhome/mpMRIFOIpublicdashboard-ProstateCancerUK_0/FullresultsStory

As patients can choose where they get referred My personal option would be to regret a referral unless it was to a hospital with an MpMRI

This will direct funds to parts of the NHS who have invested.

I hope GP's are being made fully aware of this information too.

Regards

Clare

User
Posted 22 Jan 2017 at 12:42

Fantastic work done by Prostate Cancer UK using Freedom of Information to find out where the MpMRI scanners actually are in the Uk ( 18th January 2917)

https://public.tableau.com/profile/ali.cooper#!/vizhome/mpMRIFOIpublicdashboard-ProstateCancerUK_0/FullresultsStory

As patients can choose where they get referred My personal option would be to regret a referral unless it was to a hospital with an MpMRI

This will direct funds to parts of the NHS who have invested.

I hope GP's are being made fully aware of this information too.

Regards

Clare

User
Posted 22 Jan 2017 at 21:46

I really hope you get the scan you want.
Have you spoken to your GP about the London referral or is it all down to your consultant.?

Fingers crossed for you Chris

User
Posted 22 Jan 2017 at 22:14

That's frustrating Chris - I hate the "going through the motions" even when you know it is unlikely to show anything different from the last time and there are better options available.

Perhaps time to be a "squeaky wheel"? Hope you get a better path forward.

Chris

User
Posted 22 Jan 2017 at 23:56

It isn't a straightforward issue though, is it ChrisJ, and presumably the reason you are unlikely to be referred is that it is still in trial stage. Like John with the FACBC tracer, it seems you might not meet the narrow trial criteria :-(

 

This is a useful perspective from 'those that know'  

http://www.birminghamprostateclinic.co.uk/prostate/assessments/pet-scans-for-prostate-cancer/

 

For anyone interested, this is the report on FACBC which has had great results in Italy and is now being trialled at a small number of hospitals in England (but again, with very narrow criteria) 

http://www.europeanurology.com/article/S0302-2838(13)00905-6/fulltext/the-new-promise-of-facbc-position-emission-tomography-computed-tomography-in-the-localization-of-disease-relapse-after-radical-treatment-for-prostate-cancer-are-we-turning-to-the-right-radiotracer

 

 

Edited by member 23 Jan 2017 at 00:08  | Reason: Not specified

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

User
Posted 23 Jan 2017 at 01:42

I think it was our member Roy who was one of the 2 patients treated in Germany (Munich) referred to in the first link Lyn gave to birmingham prostate clinic.

This link details results of a comparison between 18F Chlorine and 68 Gallium PSMA scans in the same men. Here is the conclusion

'This study presents a retrospective comparison between the established 18F-fluoromethylcholine-based PET/CT and a novel method of PET imaging with a 68Ga-labelled PSMA ligand in the diagnosis of recurrent PC. Our experience with 68Ga-PSMA PET/CT strongly suggests that this is an easy to handle method which can detect PC relapses and metastases with significantly improved contrast when compared to choline-based PET/CT. Nevertheless, the most significant advantages of 68Ga-PSMA PET/CT are the sensitive detection of lesions even at low PSA levels, of even small lymph node metastases (primarily due to a high radiotracer uptake) and of central bone and liver metastases due to low background signal.' For anybody wanting to read details this is a link https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3843747/

I am hoping to be offered the 68 Gallium scan at UCLH as my PSA is now above the figure suggested by University Hospital Heidelberg who are familiar with my case to have this scan. Naturally, I hope to have the scan at UCLH within the NHS rather than have to pay. (I would expect the scan itself would be about £2000 in Heidelberg based on my recollection of what Roy said he paid in Munich).

Edited by member 23 Jan 2017 at 01:46  | Reason: Not specified

Barry
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User
Posted 22 Jan 2017 at 18:33

Useful information Clare.

Interesting that my local hospital in Canterbury has it, but I was referred to another hospital in the area for my MRI, even though I had my CT scan at Canterbury.

Chris

User
Posted 22 Jan 2017 at 20:43

Very interesting stats overall. Those who have the machine in many cases have very low percentages for using them in PCa diagnosis...

But things seem to be changing pretty quickly .... Interesting our urologist works for an NHS trust that has the machine and usied it for 10% of OCa diagnosis patients. Via BUPA we automically got the MPMRI first ( we were completely ignorant at the time!m

So my position is still

' time spent on reconnaissance is never wasted'

Prostate cancer UK are doing a great job.

User
Posted 22 Jan 2017 at 21:28

This is all great information and mpMRI seems to be the way forward. However it missed my G9 T4 cancer. It's not infallible and you have to hope the guy reading the scan is an expert just like you hope a surgeon is time served. And it all boils down to budgets. Yes you can get treatment elsewhere , but only if your consultant refers you. I'm due a Choline PET scan next month but I desperately want the superior PSMA PET scan in London. I have the right to this scan but I don't think I'm going to get it.

User
Posted 22 Jan 2017 at 21:46

I really hope you get the scan you want.
Have you spoken to your GP about the London referral or is it all down to your consultant.?

Fingers crossed for you Chris

User
Posted 22 Jan 2017 at 22:00

I was told by my specialist PCa nurse at Southampton that they had only just sourced Choline PET at Oxford. I already had one last year and it showed nothing despite 6 week psa doubling post op. The PSMA PET is supposed to be so much better so I'd rather have that if I'm going to have a second run at it. But he said it's unlikely I'd be referred. I've asked all the right people. Thanks for your wishes.

User
Posted 22 Jan 2017 at 22:14

That's frustrating Chris - I hate the "going through the motions" even when you know it is unlikely to show anything different from the last time and there are better options available.

Perhaps time to be a "squeaky wheel"? Hope you get a better path forward.

Chris

User
Posted 22 Jan 2017 at 23:56

It isn't a straightforward issue though, is it ChrisJ, and presumably the reason you are unlikely to be referred is that it is still in trial stage. Like John with the FACBC tracer, it seems you might not meet the narrow trial criteria :-(

 

This is a useful perspective from 'those that know'  

http://www.birminghamprostateclinic.co.uk/prostate/assessments/pet-scans-for-prostate-cancer/

 

For anyone interested, this is the report on FACBC which has had great results in Italy and is now being trialled at a small number of hospitals in England (but again, with very narrow criteria) 

http://www.europeanurology.com/article/S0302-2838(13)00905-6/fulltext/the-new-promise-of-facbc-position-emission-tomography-computed-tomography-in-the-localization-of-disease-relapse-after-radical-treatment-for-prostate-cancer-are-we-turning-to-the-right-radiotracer

 

 

Edited by member 23 Jan 2017 at 00:08  | Reason: Not specified

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

User
Posted 23 Jan 2017 at 01:42

I think it was our member Roy who was one of the 2 patients treated in Germany (Munich) referred to in the first link Lyn gave to birmingham prostate clinic.

This link details results of a comparison between 18F Chlorine and 68 Gallium PSMA scans in the same men. Here is the conclusion

'This study presents a retrospective comparison between the established 18F-fluoromethylcholine-based PET/CT and a novel method of PET imaging with a 68Ga-labelled PSMA ligand in the diagnosis of recurrent PC. Our experience with 68Ga-PSMA PET/CT strongly suggests that this is an easy to handle method which can detect PC relapses and metastases with significantly improved contrast when compared to choline-based PET/CT. Nevertheless, the most significant advantages of 68Ga-PSMA PET/CT are the sensitive detection of lesions even at low PSA levels, of even small lymph node metastases (primarily due to a high radiotracer uptake) and of central bone and liver metastases due to low background signal.' For anybody wanting to read details this is a link https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3843747/

I am hoping to be offered the 68 Gallium scan at UCLH as my PSA is now above the figure suggested by University Hospital Heidelberg who are familiar with my case to have this scan. Naturally, I hope to have the scan at UCLH within the NHS rather than have to pay. (I would expect the scan itself would be about £2000 in Heidelberg based on my recollection of what Roy said he paid in Munich).

Edited by member 23 Jan 2017 at 01:46  | Reason: Not specified

Barry
User
Posted 23 Jan 2017 at 07:11

Hi Lyn
I phoned UCLH nuclear medicine department a week ago and was told PSMA PET is available now out of trial , and that I am entitled to be referred , and that the wait is 4 to 5 weeks. I have asked both my Uro and Onco for referral but not heard back yet !!

Then again I may have been talking to the cleaner at UCLH.

Great links though

Edited by member 23 Jan 2017 at 07:14  | Reason: Not specified

User
Posted 23 Jan 2017 at 08:04

Fingers crossed again that you can get this referral. Having read Lynne's very useful link to BPC I would definitely want to obtain these results. It appears the the standard scan does not work for prostate cancer so referring for it seems a complete waste of NHS resources and your time of course.

Let's hope it wasn't the ckeaner picking up the phone!

Keep us updated Chris

Clare

User
Posted 23 Jan 2017 at 10:25

Yay
As if by magic I got a phone call first thing this morning. My Uro has close ties with UCLH. He really wants me to have this scan and my case passed the MDT meeting on Friday.
But there will be red tape and NICE to contact , and it's likely that my psa is rising too fast to wait. But I may get both Choline and PSMA.
I love Southampton NHS. They have been so good to me this last 2 years. Yes I've had to fight for Cialis etc , but if you help steer your own treatment I think it helps. Here's hoping. Best wishes to all from a today brighter CHRIS J

User
Posted 23 Jan 2017 at 10:52
Super news..,well done you. I agree completely re steering your own treatment.

Let's hope the next hurdles get jumped too ..

Regards

Clare

'Time spent on reconnaissance is never wasted'

User
Posted 23 Jan 2017 at 11:21

That's definitely good news for Monday morning - well done Chris.

User
Posted 23 Jan 2017 at 13:43

Brilliant - fingers crossed x

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

User
Posted 20 Feb 2017 at 10:06
Bounce
User
Posted 20 Feb 2017 at 11:21

Bounce for Paul

User
Posted 20 Feb 2017 at 12:27

That teslas machine is not available in all cities in Spain. That's why we are going to Madrid.

The best for you, Chris.

 
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