Should I ask for a scan?

User

Posted 04 Sep 2018 at 18:36

Originally Posted by: Online Community Member

You hsve been misled by rhetoric - Promis standard has nothing to do with 1.5T or 3T. In fact, the Promis project was done with 1.5T machines.

Promis standard is about offering mpMRI before biopsy rather than after. Some of the hospitals that have mpMRI but not to standard may only offer it after biopsy or in non-standard cases such as high PSA with low volume kiw grade cancer detected at biopsy.

Thank you again for the very useful information, I think I get it now. So my hospital has the scanners but, as they don't work to the PROMIS standard, they will probably want to biopsy me first - this is not good news. If it does pan out this way, could I refuse the biopsy, go back to my GP and ask to get referred to hospital that does offer a scan?

User

Posted 04 Sep 2018 at 19:34

No point anticipating problems that might not happen. The PCUK freedom of information request was some time ago - things may have changed in your area since then. Yes you could ask to go out of area but need to consider the full implications of that - if you ask for referral to an out of area hospital, will you have problems transferring back to the local one if you need treatment or are you committing yourself to travelling long distances for treatment in the future? If you demand a treatment or test out of area, does that delay your diagnosis or mean that your local CCG don't have to start treatment within the target time? Lots of things to ask the urology team once you have that urology appointment or have received a letter telling you what's next.

All the stressing about what might or might not be offered and what you have a right to as best pathway can be blown out of the water as there are always exceptions. My OH was referred with an almost normal PSA of 3.1, he got a urology appointment through the post and turned up to discover that it was a TRUS biopsy. He had it and then went to work - no warning, no information, no problems, no worrying about it. He was diagnosed with a T1 G7(3+4) and THEN they did the scans. Good job it wasn't the other way round as the scan was completely clear - if he had had that first, he may not have been diagnosed. When they operated, it was in every bit of his prostate and into his bladder - not all prostate cancers show on scans.

Why not give the urology department a ring and ask them what the normal pathway is there? Or contact your local PC support group - they will probably know.

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

User

Posted 04 Sep 2018 at 20:18

LynEyre - Thanks for info again, I guess I’ll just see what the urologist suggests. That’s a very scary story about your OH, it must have been one hell of a shock.

User

Posted 04 Sep 2018 at 21:54

But do remember Lynns OH was scanned in 2009 and things have moved forward a long way with the introduction of MpMRI scans being a game changer. The trial of the 1.5T machines was very positive of course and now with a 3T magnet things have improved again. PCUK are continuing to fund research and promote better practice and hopefully progress will continue.

Good luck

Clare

User

Posted 04 Sep 2018 at 22:30

This is true but it is also possibly an odd version of PCa since his dad died with a PSA of 1.2 - and even the most modern tracers don't necessarily solve the problem as CJ has a post-op PSA of 30-odd and even a PSMA couldn't spot any cancer in his body.

Scans are a useful tool, as are biopsies but neither are foolproof. It is a combination of available diagnostics that gives the most reliable results.

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

User

Posted 04 Sep 2018 at 22:33

Hi Neil, no it wasn't such a shock since we were already dealing with my dad and his dad. The shock was being the youngest in the clinic by about 20 years but even that has changed recently.

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

User

Posted 04 Sep 2018 at 22:47

Interesting that your psa was lower on the 3rd test. Your next will be your 6th, could that be lower? It's a slow rise which isn't a bad thing. The up and down could be a sign it's inflammation, but I'm not at all qualified to say that.

You ask if you should ask for an MRI and then got involved in a debate about the quality of the equipment. Also whether to have a TRUS or a template biopsy. Less than 2yrs ago I had a TRUS then an MRI. They were very quick with the MRI, 3 days, and then about 5 days to the result. Whereas the biopsy took a week and the result 2 weeks. So perhaps if you have an MRI you could know something in just over a week, whereas the biopsy could be nearly 3 weeks.

Alternatively there is a lot said about over treatment and many doctors want to find genuine signs. Some say that PCa is often a slow disease where you can wait. Your psa isn't that high and it isn't rising that fast so you could have time to make decisions that take a bit longer. On the other hand that's a personal decision about risk. The low risk decision could be to have the TRUS and if it finds nothing then have a template biopsy and/or an MRI. You might have just an enlarged prostate. I hung onto that idea for a few weeks with a psa of 9 as I seem to recall the stats said I'd a 40% chance of it being benign which seemed quite decent odds.

So you could go with the flow or ask for an MRI as long as the dates aren't too long. Theoretically they have 30 days to diagnose you from the day the GP referred you.

These notes start off short but grow, I hope it makes sense.

User

Posted 05 Sep 2018 at 00:05

Claret - Thank you for taking the time to respond. Your comment about things moving forward resonate with me as during my 26 years in environmental research I saw much innovation and progress. With my background I was always going to download the PROMIS study and looked at the findings, to me the benefit of an initial mpMRI seems irrefutable but whether my local hospital sees it that way remains to be seen.

LynEre - Good grief Lyn, three men in your life going through a similar thing, I now see where your knowledge and insights are coming from, I hope all is still going well.

Peter sans Prostate - Thank you for responding. Very observant of you to spot the strange drop in the psa readings, it was that drop that took the heat off the whole thing. Strangely enough, after my first reading of 4.8 I was referred to the urologist who after a flow test and DRE asked me why I was even there! That shook me initially as I’d been referred by my GP, but it made me feel like I was wasting their time. Although my levels are rising slowly, it is in the back of my mind now that something might be amiss, so another referral to see the urologist is probably the right thing. I’m just hoping I get the appropriate tests in the right order and I can get it sorted one way or another - we’ll see.

User

Posted 05 Sep 2018 at 00:55

I have a pal whose PSA fluctuates around 6. It's been like that for several years now and he has been diagnosed with PIN which is a sort of precancerous assessment. It may or may not chance to become considered cancer in due course. I did read the chances were about 50 50 so PIN remains another possibility for somewhat raised PSA. My friend has had no treatment whatsoever.

A leading urologist is on record as saying that no urologist would prefer a biopsy prior to MRI and that at UCLH they had done MRI first for the last 6 or 7 years and that way round was increasingly being adopted.

Barry

User

Posted 05 Sep 2018 at 02:23

Yes, we here are a bit obsessive about the minutiae of diagnosis and treatment, and the resolution of scans and number of cores sampled in biopsies, etc.

But you did ask!

Chill out, and wait for things to take their course. There are much, much, worse cancers, and hopefully you haven’t even got one!

Cheers, John

User

Posted 15 Oct 2018 at 18:35

Well I finally received my appointment to see the urologist, 4th Jan 2019!! That’s a whopping 17 weeks since my GP visit and dre exam. Is this the norm for the NHS these days? Got to say, I’m a little bit concerned having a rising psa and having to wait all this time. Has anyone managed to wangle an earlier date than their official one, or do I just suck it up and wait?

User

Posted 15 Oct 2018 at 19:03

It can depend on whether you're referred as urgent. If urgent cancer it should be 14 days. I read that Stephen Fry and Bill Turnbull created a rush for tests. You could ask if your GP referred it as urgent and ask him why not. Going down the private route might end up expensive.

User

Posted 15 Oct 2018 at 19:26

It seems that either a) you have been referred on the non-urgent route rather than via the cancer pathway or b) because you are already under the urologist’s care the normal timescales do not apply or c) you are being delayed because you have asked for a non-standard route (for example if your GP has told them that you want the mpMRI rather than the normal diagnostic route).

You could phone the urology department or the urologist’s secretary to clarify why it isn’t until January.

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

User

Posted 15 Oct 2018 at 20:32

Peter sense Prostate, LynEyre - Thank you both for the advice. Thinking back, I’m guessing the GP doesn’t see me as urgent as I didn’t really push him very hard for a referral, I just didn’t realise waiting times were so bad.

User

Posted 16 Oct 2018 at 07:06

I was diagnosed with prostate cancer earlyt his August ,I'm going in tomorrow to have my prostate removed, will let you know how it goes and how it is after the operation.

User

Posted 16 Oct 2018 at 08:16

Colind - All the very best, hope all goes well.

Edited by member 16 Oct 2018 at 08:17 | Reason: Not specified

User

Posted 16 Oct 2018 at 10:21

Sounds like your GP is useless. I would be inclined to see a consultant privately, it could be 250 quid well spent.

Also you can get 3t imagining privately eg:
http://www.medicalimaging.org.uk/locations

User

Posted 16 Oct 2018 at 11:48

Originally Posted by: Online Community Member

Sounds like your GP is useless. I would be inclined to see a consultant privately, it could be 250 quid well spent.

Also you can get 3t imagining privately eg:
http://www.medicalimaging.org.uk/locations

not necessarily - it seems the GP is following the advice of the urologist. For all we know, the uro may have given the GP a threshold for re-referral (10 being the magic number oft quoted here) and once you are under the care of urology, the cancer pathway targets from GP to specialist are irrelevant. I think Neil needs to clarify with his GP or the urology department whether this is a new referral or a re-referral.

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

User

Posted 16 Oct 2018 at 23:06

francij1 - Thanks for the link for medicalimaging but can’t see any prices, any idea how much a private mpMRI scan would cost?

LynEyre - My GP did show me the notes he received from the urologist, after my original visit and it just said they would be prepared to see me again if my psa remained high. I’m guessing they just don’t see it as urgent.

User

Posted 17 Oct 2018 at 04:06

Originally Posted by: Online Community Member

francij1 - Thanks for the link for medicalimaging but can’t see any prices, any idea how much a private mpMRI scan would cost?

Someone here in the last week said he paid £1500 for a 3T scan, and a friend paid the same for one a couple of years ago. Don’t know what resolution his was.

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