An Unknown Journey

You should insist on a 3T resolution mpMRI scan and be prepared to travel to get one, and if you do end up having to have another biopsy, make sure you ask for a much more accurate template biopsy rather than another TRUS. Those are particularly pertinent in low Gleason scores such as yours. 

You should also read the post today by Old Barry, ’Challenging the Doctor’.

Best of luck anyway.

Cheers, John.

Edited by member 17 Feb 2019 at 14:21  | Reason: Not specified

Strangely, no-one seems to be able to tell me what resolution my diagnostic scan was, although I seem to recall a ’GE 3T’ badge on the MRI machine as I was going into the tube. I might be mistaken.

Tommy the Tumour at 15mm would have been picked up at whatever resolution, as he would have been if I had had a TRUS biopsy.

All of the diagnostics were done in Coventry, and were nothing to do with Professor Whocannotbenamed here, who only carried out the prostatectomy. He didn't even look at the DVD of my scan when he took me on, just my written case notes. Disappointed my film didn't get an Oscar nomination for next week though.

Cheers, John.

Edited by member 18 Feb 2019 at 01:42  | Reason: Not specified

I had my appointment with my Urologist today. He was concerned that I had not seen him for nearly 8 months and I explained it was certainly not of my making and that my appointments had been cancelled even though I had informed them that they were of high importance. He blamed the problem on the Appointments Centre.

I was given a DRE and he said that the prostate felt the same (a small amount of firmness) as the previous DRE, 12 months ago.

He said that I should now have another MRI and TRUS biopsy. I asked if I could have the better mpMRI as recommended by NICE but he said that I should have the same scan as before so that a like for like comparison could be made. I did remind him that my first and only MRI had shown nothing.

I asked if I had to have another biopsy and was told that the Active Surveillance regime required one and that if I declined one then I would be removed from Active Surveillance and moved to Watchful Waiting which would just use PSA tests as markers for any disease progression.

I can’t say that I came away from the consultation reassured that I was being offered the best diagnosis methods available and I would be grateful if someone can advise whether the advice and information I was given today was correct.

Thanks in advance.

It was a bit heavy handed for the Urologist to say you'd be put onto Watchful Waiting if you refused the MRI considering your psa has reached 7.  Although if they've offered diagnostic treatment and you're confident it will happen in a reasonable timescale it would be better to take it, unless you can guarantee better treatment elsewhere in similar timescales.

I've found it can get a little messier when you attend a hospital that isn't your local one.  My GP can't see my results without looking through the scanned letters from the other hospital which he doesn't do.  Otherwise though I'm happier at the other hospital where the surgical team are based and they have a big radiology centre.  Although my local hospital has a very helpful Macmillan service which the other one doesn't seem to have or at least I haven't been offered it after the op.

The 4 months delay in your appointment isn't good, no doubt appointments will blame urology but there is also an onus on the patient to keep pressing.  I'm not sure how true it is but I read that patients who complain, about their GPs, actually get better treatment, although I've always worried, and apparently so do others, it would be the opposite.

3+3 isn't too bad a place to be although you can never guarantee that the biopsy got the worse bit and you don't know where it's located.   I recall reading in one of Lyn's posts that MRI under psa 10 is unreliable, although in my case they said I had a 13mm tumour with a psa fractionally under 10.  Presumably yours is small if they can't see it at all and they do say that many men have latent cases so you always wonder if you made the right call.   All the best  Peter

I don't think you should assume that your previous scan was 1.5T - that is the standard that PCUK / PROMIS says all hospitals should have but there are many nationally that don't have it yet, let alone 3T and you may find (if you click on the interactive map) that Huddersfield still has one of he pre-1.5T machines or is even one of the hospitals using an obsolete scanner :-(

I've just found this that seems to state that my NHS Trust can access mpMRI scans.

https://www.npca.org.uk/provider-results/trust/calderdale-and-huddersfield-nhs-foundation-trust/#services

I'm curious as to why a Urologist would not refer me for an mpMRI when the option is available and is the recommendation of NICE. Is it likely to be a cost reason?