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User
Posted 16 Jul 2022 at 23:32

When I had my HIFU in December last, I was told I would be having another MRI in twelve months.  I was therefore surprised today to receive an appointment for an MRI with contrast next month at UCLH.  They were aware that my first post HIFU PSA at 3 months was 0.02 but not that I recently had a further reading of 0.02 after another 3months. I am debating whether to say in the light of this do they want to defer the MRI or is this yet another UCLA mix up? 


It comes at a good time in that I was planning  to stay with my daughter in Surrey for a few days about the time and it would be more convenient to get to London from there than from Devon.  However, whilst the prospect of another MRI is pretty routine, I think I have had about 13 so far, not all PCa related, I am a little concerned about the possible effects of having accumulatively so much contrast (Gadolinium), notwithstanding most being excreted shortly after the scans.  Unfortunately, I don't know how many of my MRI scans included contrast

Barry
User
Posted 17 Jul 2022 at 16:00

Hi Barry
Maybe they have a reason for bringing the MIR forward ,
I think I would ask the question 
Regads Barry

User
Posted 19 Jul 2022 at 00:34
I don't think they consider that Barry needs investigation due to his PSA - more likely that they want to see whether the HIFU has worked
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
Posted 17 Jul 2022 at 11:41

Well with the PSA stable I would be inclined to delay the MRI until it may be more useful, perhaps December.


I think if the MRI came back looking suspicious you wouldn't opt for anymore treatment at the moment so there is not much point in looking for trouble.


Of course if you were keen to start extra treatment in the event of suspicious MRI then the sooner the better. It may be that the MRI results are of interest to the medics, maybe someone is doing a research paper and they need to get your results before they can complete it.

Dave

User
Posted 17 Jul 2022 at 16:00

Hi Barry
Maybe they have a reason for bringing the MIR forward ,
I think I would ask the question 
Regads Barry

User
Posted 17 Jul 2022 at 16:15

It might be my ignorance but is 0.02 and stable not a good enough result?  At 0.02 is an MRI going to find anything?

User
Posted 17 Jul 2022 at 18:01
Hi Peter,

I am very happy with a second PSA of 0.02 after my HIFU and would gladly defer another MRI until there is a significant increase in PSA. However, I am very grateful that the Professor who did the procedure was prepared to repeat it, particularly as the top HIFU man previously declined to do so. If the reason for the scan is to help with research or for statical purposes, I am happy to have it. Even if the scan shows some tumour, they will not do a further focal treatment, so it will just be HT at some point.

There remains the possibility that the booking clerk who made the appointment acted precipitously or on outdated information which wouldn't be the first time! I have decided to try to ask more questions but it's a bit like when you take your car in for work at a franchised dealer. You sometimes have to get by an uninformed receptionist to actually speak to a technician who is involved with your car.

Meanwhile, I must update myself on current thinking on long term adverse effects of much Gadolinium.
Barry
User
Posted 17 Jul 2022 at 22:33
My instinct is that it is an error - maybe an appointment for the scan you already had!?!? Or just a look at the area of the most recent HIFU to see if there is any change (a reduction) from the pre-HIFU images?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 18 Jul 2022 at 21:43
Why do they think you need investigation at 0.02? I am at 0.03 undetectable (I find out next week if that is still the case) and was told that was great news.
User
Posted 19 Jul 2022 at 00:34
I don't think they consider that Barry needs investigation due to his PSA - more likely that they want to see whether the HIFU has worked
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 25 Jul 2022 at 12:19
I spoke with UCLH today and as suspected yet another error by UCLH. When I questioned why I was being given an appointment for an MRI in August when I had been told both orally and in writing previously that it would be December, this was how it was explained to me. My notes said I should be given the next available slot, at which point the Booking Clerk had stopped reading and made the appointment but it went on to say 'in December'. Had I not questioned this appointment, it would have gone ahead prior to the time requested by my consultant and with some concern on my part as what had changed. I mention this as patients should be aware that hospitals do make mistakes sometimes, so patients should question what appears may be wrong.
Barry
User
Posted 25 Jul 2022 at 17:02
TBH you need to assume everything is a mistake and question it all!!
 
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