P.S. This is from the Grauniad, so it may of course be a misprint:
https://www.theguardian.com/society/2019/apr/07/nhs-patients-have-prostate-cancer-scans-cancelled-after-supplier-problems-england
Dated April 2019 it states:
A UCLH spokeswoman said: “It is well-known that choline is a fragile tracer and its production can be relatively unreliable, leading to unpredictable short-term cancellations. We have been working constructively with NHS England to address the choline production issues and they recently agreed to fund PSMA scans for a limited period.”
It doesn't define "limited" however
Reality is merely an illusion, albeit a very persistent one - Albert Einstein |
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My latest PSA reading is up to 0.09 ug/L
I saw Cornwall's new oncologist again yesterday. Apparently the threshold at which the NHS thinks a fancy scan might be able to detect something is 0.1, so it looks like I have another 3 months to wait.
I couldn't help but agree with her that zapping my prostate bed with RT pretty much at random at this juncture is not a particularly cunning plan.
Reality is merely an illusion, albeit a very persistent one - Albert Einstein |
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Do you know what Cornwall's definition of "a fancy scan" might be?
I was reading a paper a couple of days ago. Patients requiring salvage treatment went through the normal diagnostic and treatment selection process up to, but just short of starting the treatment. The research then did a PSMA PET scan, and in over 60% of cases, the results from this scan changed the treatment selected.
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Hi Andy,
Do you by any chance have a link to the paper you're referring to?
Last time around I eventually received a choline PET scan in Poole the second time I travelled up there. In view of the Grauniad article I linked to above I'm rather hoping for a PSMA next time. First of all it seems that I have to cross the 0.1 threshold though!
Jim
Edited by member 09 Oct 2019 at 18:26
| Reason: Not specified
Reality is merely an illusion, albeit a very persistent one - Albert Einstein |
User
Jim:
Impact of 68GA-PSMA PET / CT on treatment of patients with recurrent / metastatic high risk prostate cancer - a multicenter study
(I should confess I didn't read it carefully. It popped up in searching for something else - the impact of taking hormone therapy on PSMA scan results.)
The NHS does Choline PET scans normally, although some areas will do PSMA in special circumstances. PSMA scans can be done privately for somewhere near £3000 (or less if you go abroad). I presume Choline PET scans are cheaper, but I've no idea the cost.
Both Choline and PSMA PET scans work most reliably (and almost identically, although PSMA fractionally ahead) for PSA >= 2.0
When you drop below 2.0, Choline PET scans drop in detection rate faster that PSMA, so PSMA is better.
Different centres have different lower cutoffs for PSMA - it depends how much they're happy to risk in cost of negative scans. Some are 0.5, but it can still find mets below this, particularly if they are not right next to the bladder or kidneys. (The bladder and kidneys tend to 'white out' because the tracer is excreted through kidneys, and it's difficult to see small mets right next to them.)
Edited by member 09 Oct 2019 at 21:58
| Reason: Not specified
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Hi Andy,
Thanks very much for the link and additional info.
On reading your bio I'm rather glad to have had Leo give me a robotic RP at the outset despite my initial PSA of well over 100. I also cannot help but wonder if the MDT at Treliske hadn't bothered faffing around with choline scans looking for apparently non existent mets my PSA might still be undetectable.
Jim
Reality is merely an illusion, albeit a very persistent one - Albert Einstein |
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Well that was unexpected!
I've received a phone call from UCLH and I'm now booked in there for a PSMA scan in the 2nd week of November.
I suppose 0.09 + my current 0.01 rise per month >= 0.1 by then.
Plus perhaps it helps that I am of course a medical man of mystery? Leo somehow got my PSA down from >70 to <0.03 with a few simple snips.
Reality is merely an illusion, albeit a very persistent one - Albert Einstein |
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I got the results of my recent PSMA PET scan today.
Nothing out of the ordinary was found, and no further treatment suggested at this time. However my PSA schedule has been increased to 6 weekly, including one today.
I also discovered that my scan involved injecting me with 18F rather than 68Ga
Jim
Reality is merely an illusion, albeit a very persistent one - Albert Einstein |
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18F has had fantastic results at very low levels of PSA and is sightly more stable than 68G - the main research was in Italy, look for reports on FACBC. This is what our onco says John will have if he reaches 0.2
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Reality is merely an illusion, albeit a very persistent one - Albert Einstein |
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Sorry Jim, you are quite right ... FACBC is shortened to F18 and is different to 18F :-/
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Originally Posted by: Online Community MemberHi Lyn,
The paperwork from UCLH states that I had an "18F-PSMA PET MR" examination, which I don't think is the same thing as FACBC?
It seems there are quite a few "18F-PSMA" abd tracers currently being evaluated. Here's an allegedly "2020" review paper:
https://www.researchgate.net/publication/336880969_18F-Labeled_PSMA-Targeted_Radiotracers_Leveraging_the_Advantages_of_Radiofluorination_for_Prostate_Cancer_Molecular_Imaging
"I still don't know which of those UCLH uses at the moment. They performed an extra scan at the end after asking me to empty my bladder, so maybe DCFPyL"
If you could establish and report the full name of the Scan you had it would be of interest, Actually, there are so many scans and variants now that it becomes confusing as to what was precisely used. I do know that the 18F DCFPyL scan developed by Marty Pomper and associates at John Hopkins was being trialed in the USA and Canada with Licence arrangement for Australia and New Zealand. It must have been a couple of years ago now and I contacted the co-ordinater in the USA to ascertain whether I met the trial criteria, I did but was told the trial was only open to indigenous men. It was indeed rated better than the 68 Gallium PSMA one, so you would have done well to get this at UCLH as we seem to be well behind others in taking up new technology. There is another variant termed 18F PSMA 1007 https://www.ncbi.nlm.nih.gov/pubmed/31253741
and possibly other variants too, I have not done much research on this recently.
Edited by member 20 Nov 2019 at 16:33
| Reason: Not specified
Barry |
User
I've just received the results of my latest PSA test - 0.1
I've also had my testosterone tested for the first time ever - 23.6!
Barry - I'm booked in to see my oncologist again tomorrow. If all goes to plan I'll try and remember to pose that question.
Reality is merely an illusion, albeit a very persistent one - Albert Einstein |
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I'm just back from my trip to Treliske. Unfortunately my oncologist didn't know off the top of her head what flavour of 18F UCLH are currently using. However she did impart some interesting information.
It seems my current PSA of 0.1 would previously have been the threshold at which she would have considered RT. However the RADICALS-RT trial recently published results showing no better outcome from "early RT" as opposed to monitoring things for a while:
http://www.radicals-trial.org/news/
She will highly recommend RT in my case if and when the number rises to 0.4, but I am at liberty to ignore her advice!
Edited by member 04 Feb 2020 at 23:22
| Reason: Not specified
Reality is merely an illusion, albeit a very persistent one - Albert Einstein |
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The study sounds interesting but I'd like to know a lot more before being happy with its bare summary. For example what does RT straight after surgery mean? Is a random selection appropriate? Was psa velocity not a factor in selection.
I guess for a true comparison it would be totally random but if it had been me given less treatment than needed I wouldn't be very pleased.
If I was high risk I definitely wouldn't want to be in a study and that could bias the results.
Thanks for the link, I'll dig some more.
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Hi Peter,
I don't know if a more "academic" journal article concerning the study is available online.
When I have a spare 5 minutes I'll do some digging myself.
Jim
Reality is merely an illusion, albeit a very persistent one - Albert Einstein |
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The criteria for entry into the study was T3A as a minimum. I was offered the trial and was told the decision to radiate or not was entirely random.
So basically anyone who qualified for adjuvant RT under the old rules (T3A+ post op) and agreed to the trial was randomised into adjuvant RT or wait and see.
Interestingly I chose NOT to enter the trial because although I was T3A I was also G3+ 3 AND had PSA < 0.008 so I had a good shot at a durable remission despite the T3A. As my PSA has since crept up to 0.03 the "new" guidelines to wait until 0.4 are reassuring!
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Thanks for that info Jonathan,
A good decision! I'm not sure that the 0.4 number is actually "a new guideline" for anyone other than yours truly. I made clear I was in no rush for my prostate bed to be zapped at random! Apparently some others are keen to throw everything at "the problem" at the earliest opportunity.
I have located this brief academic overview:
https://academic.oup.com/annonc/article/30/Supplement_5/mdz394.042/5578034
Adjuvant RT after RP increases risk of urinary morbidity. An observation policy with sRT for PSA failure should be the current standard after RP.
Reality is merely an illusion, albeit a very persistent one - Albert Einstein |
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Interesting, Francij1, that it's T3a minimum as I'd have thought psa rise and velocity would come into it at least. Brave of anyone not to be treated by random selection. I still think it depends on your own condition and with a psa <0.008 I'd agree. I've read that the accuracy can be not so good at all at those levels and I'm happy with my hospitals <0.05.
I noticed you'd, Jim, written before you didn't want to rush to having your prostate bed/pelvix radiated blindly.
I recently had a random (false) psa result at a different hospital that led me to a weekend of serious thinking and the blind shot was top of my priorities. Although I thought I'd several months to go, and the velocity was so high I wasn't sure they'd let me have it, if it carried on. It's a careful balance about how long to wait and that study could be of interest.
Anyway a 2nd psa test at the usual place was undetectable but it made me realise what an edge I could be on. Thainks for the link I'll look at this.