I've been on the forum a while and picked up a fair bit of knowledge, but I have no direct personal experience of advanced metastatic cancer.
Regarding PSA tests. They were never intended as a diagnosis tool, let alone a screening tool. They were always intended as a monitoring tool, and for that purposes they work very well. The main reason they are useful for monitoring is that you have a whole history of tests to look at and the change overtime is more important than the absolute value. When it is used for diagnosis you only have one value, and that is not very useful, but along with other tests (MRI, biopsy) it is useful. If it were used for screening (without other tests) it would produce an avalanche of false positives.
PSMA tests after recurrence are useful as if there are only a small number of mets they may be curable with SABR.
If the initial diagnosis is advanced cancer, it is probably based on a very high PSA or a bone scan. A PSMA isn't likely to be offered as once there are loads of mets SABR is not practical.
A PSMA scan at diagnosis would be useful for someone with locally advanced cancer. It could pick up if there are one or two mets elsewhere which could either be treated with SABR, or upgrade a locally advanced diagnosis to advanced, not a nice situation to be in but saves the patient having a local treatment which will certainly fail.
Because PSMA scans require a tracer which is hard to produce (at the moment) they have to be rationed.
From my understanding of the scans and prostate cancer if PSMA has to be rationed then the groups it would benefit in descending order are.
Recurrence - looking for a small number of mets to be SABRd, and hence cured.
Locally advanced - looking for SABR targets (to ensure a cure) or upgrading to advanced.
Low risk - similar to above (but less likely to find anything)
Advanced - hoping to find it is not too advanced and SABR may be possible, to make it a curable disease not just a treatable one.
General population - it would be good for screening, but this will never happen due to the cost.
These are just my opinions as a lay person.
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JFD, I did write a detailed response but the the site bombed me out.
Search Google or you tube for Dr Kwon.
Thanks Chris
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Thank you for the above replies.
I am surprised to hear of PSMA contrast restrictions in the UK or is it Europe as well? We do not have any availability problems in Australia.
I would remind posters that I am seeking responses from men who have partaken of a PSMA Pet Scan for diagnostic purposes and subsequent treatment experience and outcomes if known. Clearly that is my focus for this topic.
If as I suspect respondents are not forthcoming, then that in itself may be an indicator of underutilisation of PSMA Pet Scan technology in the UK.
User
Originally Posted by: Online Community MemberThank you for the above replies.
I am surprised to hear of PSMA contrast restrictions in the UK or is it Europe as well? We do not have any availability problems in Australia.
I would remind posters that I am seeking responses from men who have partaken of a PSMA Pet Scan for diagnostic purposes and subsequent treatment experience and outcomes if known. Clearly that is my focus for this topic.
If as I suspect respondents are not forthcoming, then that in itself may be an indicator of underutilisation of PSMA Pet Scan technology in the UK.
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We have indeed been very slow in widely adopting the PSMA scans in the UK. This is largely because the vast majority of patients in the UK are treated within the NHS which other than in trials, usually follows the recommendations made by NICE and expenditure was not authorised for quite some time. Even men who needed to have a PSMA scan initially to check they expressed sufficient PSMA to go on to have 177 Immunotherapy initally had to pay for it here. The scan was available in other European countries, particulary several towns in Germany. It was formulated in Heidelberg by colaboration of Heidelberg University Hospital and the German Cancer reserch dkfz. We were aware by contrast that Australia was an early adopter at quite a number of centres as Professor Henry Woo stated and forcast in his talk on PSMA scans back in 2016. https://www.youtube.com/watch?v=0H-g047os6c&ab_channel=ProstateCancerFoundationofAustralia
I was refused a scan within the NHS although this was available in a few hospitals in and near London so paid for one privately. I had considered going to Australia for it as for what it cost in the UK I could have paid for the scan in Australia, paid for my flights and lodging for a week. (I was aware from an American forum I was on that some Americans had done just that) However, I decided on having the 68 Gallium PSMA in the UK.
I had had HIFU as salvage treatment for failed RT and was told that I would not be given further radical treatment as from a Choline scan it was seen by my current hospital that an Iliac Lymph Node had shown sufficient uptake to indicate it was affected by PCa. In fact they gave me some anti flare tablets an a syringe of Zoladex. However, I sent a disc of the scan to other hospitals I had been involved with and they considered the uptake was not sufficient to be definitive and the size and shape had not changed fom MRI scans done many years previously. They suggested I had a PSMA scan before starting the HT. I am very glad I did because the PSMA scan showed no uptake outside the Prostate. So this meant instead of starting systemic HT, I could have more radical treatment to the Prostate. Eventually, they agreed to this and I had a further HIFU treatment. I have since had two clear MRI's and a PSA of between 0.02 and 0.05 where it is currently and has been for a year and have been told I am in remission. So had I not had that PSMA scan I would have been on HT now. It was certainly a game changer for me.
Edited by member 28 May 2025 at 13:38
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Barry |
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Reply to Old Barry
Sad to read of your patient experience wherein what we consider is a normal clinical pathway for diagnosing a recurrence in Australia came about by less than optimal means. But the ends justified the effort on your part. Enjoy your ADT holiday a while longer.
One question though, what do you think are the mitigating factor/s whereby your leading clinicians are not lobbying your Members of Parliament re updating your PCa treatment protocols? We are lucky in Australia that our politicians on both sides, usually respond appropriately when the presented clinical data is compelling.
Edited by member 28 May 2025 at 13:55
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User
Your second paragraph makes an assumption that leading clinicians are not lobbying our Members of Parliament re updating PCa treatment protocols. This might not appear to be done directly but because the NHS is in effect a State Institution, where pressure would be applied through the relevant Minister of Health just like pressure for defence spending would be directed through the Minister of Defense etc so all the Ministers for various responsibilities would fight to secure a better proportion of the Nation Cake. This would also include the Minister responsible for housing, much of which is dilapidated as are many of our schools and prisons are so overcrowded that some prisoners are being released before completing their sentences. Then there is pensions and care which accounts for a major part of costs. We now have growing debt which is being heaped on future generations and on some of the present workforce. The defence budget which has been paired back over the years is now perceived to need to be increased due to Trump's expecting Europe to pay more towards its defence. There are government bale outs and other costs I have not mentioned.. So whilst the Government would like to do more in many areas to further improve what the NHS gets and what it could provide would mean other areas would get unacceptably less. So a balance has to be struck. The majority do not benefit from the ever increasing cost of cutting edge treatment. For those with deep pockets or have private health insurance, can get what is not available in the UK abroad. So really it all comes down to shortfall of money. Thus there are limitations on what the NHS can do or provide and in some places it struggles to even provide the present service. This is despite employing a lot of people from abroad who come ready trained saving the cost of training. Really, one way or another the NHS needs people to pay more towards the ever increasing cost of the NHS if standards and protocols are to improve significantly bearing in mind the UK population generally like the idea of free treatment at the point of need. An exception to this is payment (with some exclusions) for prescriptions and basic dental work which many already have to pay towards.
How wein the UK arrived at the position is attributable to a number of factors both internal and external which I don't think necessary to go into. We are where we are and faced with growing competition from developing countries. In short, the outlook is not great and although more advanced treatment might benefit in the long term, this is unlikely to proceed where there would be significant immediate cost. Having said that, I believe the possibility of offering National PCa screening at a certain age has again been raised. Quite apart from the overtreatment argument, the real challenge to do this would be the inadequate number of MRI scanners and the already shortage of trained scan personnel plus need for more linacs and staff as this would lead to more men having RT and other treatment.
Barry |