My arithmetic must be poor... 'two-week-wait' is forty-three days.

As my initial post (https://community.prostatecanceruk.org/posts/t16125-PSA-67--I-m-glad-it-s-not-higher) shows, I'm genuinely not too bothered about the likelihood of cancer... there's nothing I can do to affect that.

My focus is on being aware of appropriate treatments, and not accepting something simply because it's convenient to a health authority.

Apart from the 'will-they, won't they?' MRI-before-biopsy issue, I see this as more of a communication problem... a preferable alternative to an envelope containing two appointments and a TRUS leaflet would have been an included note (which could have been pre-prepared, like the TRUS info) with an explanation. If I hadn't read-up beforehand, I'd be more concerned than I am.

Much of my reason for posting here is probably as a 'this is what can happen' advisory... hopefully of potential help to someone in a similar situation, and who might understandably be less-relaxed than I about delays/etcetera.

From what I've seen, other health authorities deal with this in better ways... hence my wondering just how good the treatment available locally (Torquay) might be.

@PeteOct16...

Thanks.

From what little I know, I suspect an MRI will precede a biopsy.

I'd learned that from previously speaking with local private healthcare providers, and being advised that their team was the same as that at the local hospital and that their preferred action was to MRI-before-biopsy.

But as there's no clarity, I earlier today phoned the local hospital requesting clarification - so should know in a couple days what the situation is.

On the 'when is two weeks not two weeks'... my perhaps-incorrect understanding is that 'you should be seen within that timeframe'. I haven't yet looked-into ongoing treatment times.

And, on the TRUS-or-template biopsy thing...

My uniformed view is... that with my recent PSA (66), an MRI ought to show something unwanted - for which a TRUS ought to be a relatively no-brainer 'and here it is' confirmation. But, if an MRI shows nothing untoward, a template biopsy is a more certain way to confirm problems.

And I've read that a TRUS biopsy can be negative in up to a third of cases where cancer is present, and in about a quarter of cases incorrectly identify how aggressive the prostate cancer. Seems a bit like sticking a finger up to test the wind. (Cue poor humour: 'A finger up where - what wind?')

Sounds daft, but a genuine concern is trying to avoid another temporary catheter... and as a template biopsy has a greater chance (than TRUS) of that being required, I'd probably prefer they just do the TRUS and hope that shows enough - although I might still be concerned if it seems clear.

I'm perhaps wrongly assuming that an MRI alone is unreliable, and hence a biopsy is appropriate. But, with a 66 PSA I'd likely be concerned that without doing both they 'missed something'.

Edited by member 29 May 2018 at 16:30  | Reason: Not specified

'Ever the drama queen...' in my case, whilst I of course would like to get a genuine 'you're completely ok' result, I don't expect it and hence and in some ways more bothered about them not finding what's there if they've used less-than-ideal tests.

As mentioned, I'm expecting a 'basic MRI' to find something which is confirmable by biopsy - and for which I'll strongly request template rather than TRUS.

Being sensible, it's of course better to have the temporary issue of catheter - rather than through trying to avoid it, risk un-detection.

From what I've checked, 'GP Care' isn't active here.

And, with the same personnel who provide local private healthcare, the relatively little I know suggests they're 'sensible people who know their stuff' (which, without being needlessly arrogant and unpleasant, isn't always so with NHS) - so I'm hoping that budgetary constraints aren't too much of an issue.

I'll add this further update as hopefully useful info for someone else...

The day after posting the previous update, I got a definite 'although it's our standard procedure to do a pre-biopsy MRI, you're not having one'.

Unclear on 'why', and not entirely happy, I raised a formal complaint, about:

#1 Not meeting the 2-week-wait timeframe.

#2 Not informing me of my legal rights and their obligation to 'upon my request, make reasonable efforts to obtain a quicker appointment elsewhere'. (Some hospitals include such info with the appointment letter.)

#3 That the decision to not MRI prior to biopsy was potentially negligent.

Within a couple hours the head of the Urology department phoned, explaining that he'd speak with the consultant and update me. Later that day, he phoned again to offer a meeting today with the consultant to discuss the issue.

At that meeting this morning, the consultant explained:

#1 Although he'd seen UTIs push PSA levels into the hundreds, if my level (72 and then 66 a couple weeks apart) were cancer-related he'd expect it to be so widespread that it'd be unlikely to be missed by a TRUS.

#2 That a normal non-mpMRI wouldn't be sufficiently detailed to be of merit.

#3 A pre-biopsy mpMRI wouldn't be permitted by department head.

#4 He suggested another PSA test, to help eliminate levels elevated solely as a result of an earlier UTI and subsequent DRE, and that he perform a DRE today.

#5 He noted that he spent about half of his time on diagnosis and treatment, and about the same amount dealing with complaints.

I listened and then explained my view...

#1 Based on my studies, I understood and respected his views. That it's an issue which has divided opinion, and that if I checked online I'd likely easily and quickly find twenty surgeons who agreed with him and another twenty who didn't. And, that whatever his personal assessment of appropriate diagnostics, hospitals were increasing switching away from TRUS-without-prior-MRI to pre-biopsy-MRI.

#2 I fully expected a biopsy to find cancer, and thus I wasn't asking for an MRI to potentially remove the need for a biopsy, but to assist in more appropriate sampling.

#3 A TRUS without a prior biopsy was akin to skewering a fruitcake and hoping to spear a cherry.

#4 As they'd likely find cancer and hence be doing a subsequent MRI, why didn't they just do one anyway? Particularly as the post-biopsy time required to enable the prostate to recover sufficiently for an accurate MRI would also likely affect their ability to meet the 31 and 62 day guideline timeframes for providing treatment, and that any interim hormone/other treatment they might begin to meet those timeframes could be clinically inappropriate (because they hadn't been able to perform an MRI to fully assess the cancer).

On returning this afternoon for a DRE, the surgeon explained that he's successfully lobbied his department head to agree to a pre-biopsy mpMRI, and hence a DRE wouldn't be necessary.

After thanking him, I noted that it would at least help show potential spread.
He clarified that the MRI would be localised solely on the prostate plus about a half-inch, and thus of limited use in determining spread - to which I remarked 'but if cancer has reached the margins, then that's at least a worthwhile indicator'.

So, that's it for now.

I guess the takeaway here is probably... access to good info is so easy, that it's wise to inform yourself of options and likelihoods. If you're unclear or dis-satisfied, make that clear firmly and politely. Don't be easily fobbed-off.

Edited by member 08 Jun 2018 at 15:39  | Reason: Not specified

I'm respectful and appreciative of the efforts they've made, and obviously personally satisfied that the modified diagnostic activity is better for me.

I wish though that I'd not had to push for what I feel is a sensible course. And that by posting here I may in some way potentially be helpful to others.

Nothing wrong with challenging consultants and getting explanations OR changing treatment decisions. The fact that hospital trusts allow a consultant to waste 50% of his time dealing complaints is an example of disgraceful management.

I am very pleased that you have stuck it out. A shame though, you had to struggle to get what you requested and then suffered opprobrium here for simply trying to do the best for yourself, and passing useful information to others.

Best of luck.

Cheers,

John