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PSMA scan for PSA of 0.023?

User
Posted 04 January 2018 19:15:38(UTC)
Prostatectomy in December 2016 - T3bN0M0 Gleason 9 Positive margins. Age 46.

January 2017 - PSA 0.014 January 2018 PSA 0.023

Oncologist looking to start salvage radiotherapy. She said she wanted a scan to see if it would give a more complete picture. She said I can definitely have another Choline PET scan but said a PSMA scan had a better chance of picking things up. She said she had never had a PSMA scan approved by the NHS but was going to ask again.

Is my PSA too low for a PSMA scan to be truly worthwhile? Her view was a choline PET scan might not pick anything up and that there was a greater chance of detecting something with a PSMA scan. But no guarantees.

If the NHS won't fund it, I might consider doing it privately. Where in the UK can I get it done privately and does anyone know the total cost? What about Germany?

Ulsterman
User
Posted 06 January 2018 23:19:39(UTC)

We could all go - John has a 7 seater car x

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


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User
Posted 04 January 2018 19:42:18(UTC)

I have had two PSMA PET Scans, both carried out privately at the London Clinic.

Best wishes

Dave

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"
User
Posted 04 January 2018 19:56:34(UTC)

Bear in mind that CJ has had fancy scans at a much higher PSA than yours without any success. Having said that, if I thought I could get J an FACBC I would pay.

I posted this in January 2017 on another thread

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Posted Sunday, January 22, 2017 11:56:42 PM
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


*************************************************************************************************************************************

 

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


User
Posted 04 January 2018 19:58:25(UTC)

Rough costs seem to be £1800 for choline PET scan in UK, and about £6000 for a Gallium 68 in Europe.

This thread has some useful discussion on the strengths / limitations of the different new tracers coming along

http://community.prostatecanceruk.org/posts/t12371-Psma-testing#post154275

 

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


User
Posted 04 January 2018 22:01:46(UTC)

It is possible that from what your oncologist is suggesting, that your individual circumstances suggest that a 68 Gallium PSMA scan might reveal cancer in your case notwithstanding your lowish PSA. From what I have read a more usual starting point is 0.05 for this scan for patients with similar situations to yours but due to rarity and lack of experience of the scan oncologists are very much on a learning curve of just what it can show.

As regards the cost of this scan privately, as I reported on another thread in November last, having enquired of UCLH, the figure they gave was £2,200. The Royal Marsden quoted £3,700 plus a fee for their interpreting if required. There are a number of facilities who could do the scan in Europe and prices will vary. £3,000 would not be far out for Germany. A member located in Australia on another forum said the scan could be had in Melbourn Australia for Aus$800 and for a little more or less in other parts of Australia. So, for the price of this scan in Europe you could have it, including the air fare and a few days in the sun! If you think the OZ figure is wrong, read this :- https://www.huffingtonpo...for-to-s_b_12807018.html

Barry
User
Posted 04 January 2018 22:05:33(UTC)

Hi mate
We all know I’m a bit weird but I wouldn’t even be dreaming of RT at 0.023. That measurement could have moved just because you sneezed the night before. The ideal psa for cholinePET is 3 or more. I showed nothing at psa approx 2.2.
PSMA PET is regarded as being far more accurate at much lower psa values, however at pda 2.7 it revealed zero spread as well — not even the known positive margins on my bladder neck. I stamped my feet and got the PSMA free on the NHS at UCLH. I was told privately it would be £1800 but not sure about follow up costs etc.
I don’t really know what to say as it is your cancer and your fears and logic. You need to know that salvage RT is only 50% successful and you are mikes away from the normal 0.2 start recommendation. I know you value QOL like myself and it’s a tough decision. But given your stats I wouldn’t even think of paying. On the NHS then why not ?? Remember every scan is giving you radiation poisoning in one form or another , and RT at 46 can increase the likelihood of later cancers in bowel and bladder. All my best my friend




If life gives you lemons , then make lemonade
User
Posted 04 January 2018 22:09:58(UTC)

My C/pet/ct  scan showed nothing at 1.50

but at 3.1 it showed three mets

 

User
Posted 04 January 2018 22:28:51(UTC)
My choline F18 PET scan showed cancer (moderate uptake) in seminal vesicle remnants and subtle uptake on the Prostate bed(which was already picked up by a Gadolinium enhanced MRI). My PSA was 0.7 on 30/11/16 and was increasing fast so would be above that on 21/12/16 when I had the scan.
Best wishes, Ian.
User
Posted 05 January 2018 20:21:18(UTC)

So, rightly or wrongly, I'm proceeding with a PSMA scan.  If the NHS won't pay, I will.  It may show nothing up, but my understanding is it has a better chance of picking something up than even the choline PET scan.  If anything, I may be contributing to the advancement of medical science.

On Dave's recommendation, I phoned The London Clinic today and they said they can do in at the end of January for £2588.  I prefer Old Barry's link to Australia, but I'd never be allowed the time off work.

Now Lyn, that FACBC tracer - is there anywhere we can get it?  I'm tempted!

And CJ - without you I would never have known about Invicorp 25 or PSMA scans - so thank you.

I'll keep you all posted.

And I still don't understand the graphs from the other post!!!!

Ulsterman

User
Posted 05 January 2018 20:51:32(UTC)

I would seriously do more research before paying privately for a PSMA at such a tiny tiny value. Yes I got one on the NHS , and that was partly because I was the first from Southampton General , but only on the grounds my PSA was rapidly rising and approaching 3 again. They won’t even give me another one now my psa is 12. Seriously your choice but I’d at least wait to see if your psa rises again in 3 months time. Personally I had 6 f**k -ups with PET scans with the tracer reliability and I’m not sure we’ve got that right in the UK yet. Best wishes whatever you choose , but choose wisely




If life gives you lemons , then make lemonade
User
Posted 05 January 2018 20:59:19(UTC)

“About the FALCON Trial

The FALCON trial, “Fluciclovine (18F) PET/CT in biochemicAL reCurrence Of prostate caNcer (FALCON),” is an open-label multi-center study in the U.K. designed to assess the clinical utility of fluciclovine (18F) PET imaging in the management of patients with prostate cancer with biochemical recurrence after initial treatment. The primary endpoint is to evaluate the clinical impact of fluciclovine (18F) in affecting treatment decision and is assessed by comparing records of the patient’s treatment plan after a fluciclovine (18F) PET scan with the treatment plan prior to the scan. Secondary endpoints include evaluation of the effect of treatment change in patients with positive fluciclovine (18F) PET imaging findings who had a treatment change involving radical salvage therapy; diagnostic performance; PSA threshold; safety assessment and comparison with choline PET (if performed).

The FALCON trial is jointly funded by Innovate UK and Blue Earth Diagnostics and is being conducted at six leading institutions in the UK: Oxford University Hospitals NHS Foundation Trust, University College London, Kings College London, The Royal Marsden NHS Foundation Trust, The Leeds Teaching Hospitals NHS Trust, Mount Vernon Cancer Centre and Greater Glasgow Health Board. Additional information about the FALCON trial is available at: www.clinicaltrials.gov (NCT02578940).”

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


User
Posted 05 January 2018 21:10:42(UTC)

Forget that - I built you up only to crush you! Recruitment is closed already :-(


https://www.clinicaltria...p;city=Leeds&dist=50


From what I can remember, John didn’t meet the criteria because his PSA was too low so you probably wouldn’t have got on it anyway. But as I said, if I could pay for it, I would .... our Mr B was very excited about the results it has had in Italy.

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


User
Posted 05 January 2018 21:29:58(UTC)

Lyn

Can we not go to Italy and have it done?  Surely between the two of us we could find a way??!!

Ulsterman

User
Posted 05 January 2018 21:50:18(UTC)

Best proposition I have had in a long time :-)

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


User
Posted 05 January 2018 21:50:43(UTC)

It would have to wait until a school holiday though :-(

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


User
Posted 06 January 2018 01:47:30(UTC)

Because of advances in scans it is difficult to ascertain which is the best one for a particular man's situation. It may well be that scan A reveals more than scan B with low PSA and micro mets whereas scan B shows better say within the Prostate or elsewhere. Then there is the matter of finding where you can get the scan. Often these advanced scans are only available within a trial so you have to meet the criteria of the trial. Some you can have done at varying cost as a private patient but with a referral from your GP who probably knows less than you do about scans! This is another promising possibility for some but at an early stage as yet. https://www.kcl.ac.uk/ne...ncer-test-developed.aspx

As it happens, I have an appointment with my GP next week with a view to being referred back to the Royal Marsden in the hope that they will give me the 68 Gallium PSMA scan within the NHS. Should they not be prepared to do so, I will check whether UCLH will do the scan privately as they will not do so within the NHS. Other options would be Germany or Australia but my wife is now dependent on me and no longer really up to long distance travel.

Incidentally, my original RT treating hospital in Heidelberg suggested in my situation that I had the 68 Gallium PSMA test if my PSA reached 0.7 and it is already 0.99 (at last test). If the scan showed cancer they held out the possibility of further RT/HT.

I am most interested in how you get on at the London Clinic, this could be yet another option for me. Decisions decisions!

Barry
User
Posted 06 January 2018 09:13:34(UTC)

I’d ask to come too , but I think I’d be in the way 😁😁
I might get stroppy again though and ask for an 18F PET. We can but try !




If life gives you lemons , then make lemonade
User
Posted 06 January 2018 23:19:39(UTC)

We could all go - John has a 7 seater car x

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


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