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Psma testing

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User

Posted 08 Feb 2018 at 07:07

Hi Barry , as you know I was eventually given PSMA PET at UCLH via Southampton NHS. I was the first from there to have one and I guess my case was out of the ordinary. However I’m sure I heard the words that the PSMA was a cheaper scan anyway than the Choline at Oxford. Maybe worth looking into to fight your corner ?

If life gives you lemons , then make lemonade

User

Posted 08 Feb 2018 at 15:20

Thanks Chris,

I am aware that the cost of some treatments including scans and work ups are often borne by those sponsoring 'trials' that patients take part in but am not sure who picks up the tab outside of trials if scans and or treatment is wanted in other districts outside the area of the trust where the patient is domiciled. When the Marsden in Surrey say they will give me a Choline scan within the NHS is it implicit that because my GP referred me that Devon trust or whatever they call themselves will be charged? Unfortunately, the Marsden don't do the 68 Gallium scan yet within the NHS. Does this mean that if I could get my GP to refer me to the Marsdon or the London Clinic as a private patient where I could have the scan the Marsden said would be best for me, that my GP would be committing said Devon Trust to pay the bill? Does my GP first have to seek approval of his Trust? It would of course have been more straight forward if UCLH had agreed to do the scan within the NHS but they have have already said they would not although they have the ability to do so and would be interested to see the scan if done elsewhere. (I am fed up with the way the NHS works! How much easier to have only a system where you pay insurance and can choose to have your treatment where you decide, I say as I duck to avoid the flak!) Not surprising why we are well down the league of industrialised countries for cancer mortality rates with postal code variation and passing to and fro for treatment approval)..

I have a telephone appointment with my GP tomorrow afternoon and would appreciate further information regarding the way the system works so I may know in advance how hard I can twist my GP's arm.

Edited by member 08 Feb 2018 at 15:44 | Reason: Not specified

Barry

User

Posted 08 Feb 2018 at 16:43

Just followed up by contacting Paul Strickland Centre Walter (Ulsterman ) mentioned elsewhere as providing the 68 Gallium PSMA scan both privately and on the NHS). They say they do not take referrals from GP's only consultants so I am now in the position where I can ask my GP to ask a consultant at the Marsden if they will refer me to the Paul Strickland Centre for the scan within the NHS, hopefully not having to get the GP to first obtain approval from the Devon Trust. What a palaver!

Edited by member 08 Feb 2018 at 16:44 | Reason: Not specified

Barry

User

Posted 08 Feb 2018 at 22:13

Sounds familiar. When I insisted I would pay privately for a PSMA because I wanted better than another Choline , I needed a referral. My Onco and Uro would NOT refer me as that would make them liable for the bill. They asked me to ask my GP for a referral and he just laughed and said he couldn’t order that scan ( he’d never even heard of it lol ). So it went back and forth a while and it went to a hospital higher management meeting , and then they agreed to fund it. I suppose I was young and presenting differently so I was a bit of a guinea pig !! Not sure if they still using PSMA after my no-show if results.

If life gives you lemons , then make lemonade

User

Posted 14 Mar 2018 at 15:00

Had a copy of a letter today dated 13th March 2018 addressed to my consultant at The Royal Marsden from Mount Vernon Cancer Centre. (I got referred to them as 'Ulsterman' said elsewhere that they did the 68 Gallium PSMA scan privately and for NHS Patients). Unfortunately, the latter is not the case and on checking with the centre today, they confirmed it has never been provided for NHS patients. I feel I have to record this lest others make the same mistake.

However, the scan can be had privately at their Paul Strickland Scanner Centre circa £2,400, something I am considering.

It seems to me that because so few hospitals in the UK have this scan at present, they can ask pretty much what they like. In Australia, where there are quite a number of centres offering it, the cost is around £1,000. It's getting like insurance where you have to get comparative quotes.

Edited by member 14 Mar 2018 at 15:05 | Reason: Not specified

Barry

User

Posted 15 Mar 2018 at 12:04

Barry

Mount Vernon Cancer Centre and the Strickland Scanner Centre are two different things. The Strickland Centre is an independent charity which works from a building at Mount Vernon, but it is not part of the hospital trust.

I had my Choline pet scan there. I was told that as it was a referral from my NHS consultant, they charge my trust actual costs. If I had been referred privately, it costs more. My NHS oncologist assumed it would be the same for the PSMA scan. As I ended up at the London Clinic, I don't know what the reality is.

The good thing though is that we have yet another place offering PSMA scans.

Ulsterman

User

Posted 15 Mar 2018 at 14:01

Thank you for trying to be helpful Walter,

Although the reply came from Mount Vernon Hospital, the information provided was based on their liaison with The Paul Strickland Scanner Centre. I subsequently checked directly with the actual Scanner Centre who confirmed that they do not do, nor ever have done this scan on the NHS. Somewhat buried under news on their web site they do say that that don't provide this scan for NHS patients as in the narration below scan pictures here :- http://www.stricklandscanner.org.uk/about-us/news-and-views/archive/psma

I am now in the rather embarrassing position whereby I have to apologize to my GP and consultant for asking them to refer me for the scan on the NHS having told them they did offer this.

In the circumstances, I have now set in train having the scan done privately there at the quoted figure of £2,400.

Barry

User

Posted 15 Mar 2018 at 16:01

I’m sure you remember my PSMA PET was done eventually by Southampton NHS completely free of charge at UCLH !! ??
So it can happen I guess. Maybe I was just a test case !

If life gives you lemons , then make lemonade

User

Posted 15 Mar 2018 at 20:47

Barry

They quoted my NHS trust just over £4000 to do it, according to my consultant, so I don't know what's going on. They only started offering PSMA scans a few weeks ago so maybe there has been some erroneous communication with my trust as your research seems to be a more accurate statement of what they offer.

Ulsterman

User

Posted 15 Mar 2018 at 22:45

UCLH seem to be the exception Chris. They could have given me the PSMA scan whilst I was under their care following my NHS HIFU treatment but declined to do so because they said that I would be just treated with HT regardless of what this scan showed, so reasoned that the scan would serve no purpose. However, the Marsden did think the scan would be useful, because it could mean that if the cancer was indeed shown to be in my iliac node, there was the possibility of them treating it with further RT. Unfortunately, the Marsden told me they were unable to treat NHS patients with this scan yet but hoped to be able to do so later this year.

So there is now the ironical situation that UCLH believe from the Choline scans of 2015 that the aforementioned node is cancerous but will not treat it specifically. On the other hand the Marsden are not convinced it is cancerous but if more positively identified may well treat it directly!

Barry

User

Posted 03 Apr 2018 at 23:00

Having just finished “hopefully targeted prostate bed SRT” I really wish I had known about and sought psma testing as I (and my oncologist) have no idea where the recurrence is

But hey ho - let’s hope it’s the prostrate bed

Edited by member 04 Apr 2018 at 08:07 | Reason: Not specified

User

Posted 04 Apr 2018 at 08:28

KB

Roughly this time last year I was having discussions with my urologist and oncologist about PSMA testing and neither would do it. The onco said it was a very educated guess based on experience and PSA rise that the remaining cells were in the bed. Post SRT the PSA went down to 0.04 but had a slight rise to 0.06. so yet again another wait to see what happens.

Thanks Chris

User

Posted 04 Apr 2018 at 09:35

Bill, your PSA trend is classic for stray cells left behind in the prostate bed.

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

User

Posted 04 Apr 2018 at 09:50

Originally Posted by: Online Community Member

Bill, your PSA trend is classic for stray cells left behind in the prostate bed.

Well that’s good to hear Lyn

Here’s a more optimistic man 👍

User

Posted 05 Apr 2018 at 22:02

Came upon this video which shows what a game changer the 68 Gallium PSMA scan be in determining treatment plans for many men, plus being used with Lu177 PSMA-617 instead of 68 Gallium to attack cancer cells. The introductory remarks are basic but there is some interesting stuff in this simply expressed lecture. https://www.youtube.com/watch?v=mFtMaGT0Sdc

Barry

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