Good news, bad news, any news?

Saw another consultant yesterday (dK – the fifth) and got the good news that my toilet trouble (technically Lower Uterine Tract Symptoms or LUTS) did not in his opinion preclude me from having brachytherapy (but more on conflicting opinions later).

Its certainly true that my LUTS has been getting better since the late summer when it took me to see the doctor in the first place. Its also interesting to see that on the I-PSS score used to measure these things, my symptoms were at the low end of moderate. It was also interesting to be forced to think about the impact on my quality of life using what the consultant called the “grumble” score. The surprising thing was that actually, the symptoms aren’t at all bad or inconvient and I could live with them – certainly much better than with incontinence or impotence. But anyway, I’m not usually one to grumble so this shouldn’t be too much of a surprise.

The bad news comes from some recent (2008/2007) papers I dug up which seem to suggest that a PSA of 4.3 at my age is actually very high, comparatively. This puts me way up in the top 90% of people of my age being screened and at a high risk of advanced prostate cancer in later life. Given this, it would seem that there is evidence that I have a tiger, albeit a small, possibly slow growing one, rather than a pussy cat. While this also ties in with what dK said yesterday, it would be nice if he could have been more measured and explanatory in what he said rather than coming across as someone who might be engaging in a spot of brow beating.

Which brings me to the “no news?”. Its good to be finding more research which related to my case, but its also clear that there is disagreement in the profession, particularly if you look at the number of different sets of clinical guidelines around, how they are produced and whether or not they agree or disagree. While I can’t clearly compete with the professionals – its their life work after all – and don’t have the time, its not a easy task to be a well informed, empowered patient.

The next thing is a fifth (post diagnosis) opinion next week and a chance to ask more questions about the issues raised by the latest reading.

The numbers – what have I got?

Before going on, its worth putting down the diagnostic numbers that describe my condition, so I don’t forget. As for how we got here, more on that later. My raw numbers, the sort of thing I imagine any prostate cancer sufferer could rattle off for you, are:

PSA: 4.3 – a measure of the marker hormone used to detect potential cancer activity – my socre is not bad if you are 60, but a warning sign for someone my age where it should be 2.5 – done through a blood test;

Gleason score: 3+3 – a measure of how cancerous cells look in a biopsy – at the low risk end of the spectrum and the depending on who you talk to – found out by biopsy;

Staging: T1c – a measure of the spread of the cancer – my score (which goes up to T4) means it is still all within the prostate and is of microscopic size – judged using digital rectal exam (finger up the bottom) and confirmed by MRI

Spread: No, Mx – means no spread to the lymph nodes (No) and the doctors don’t think it is worth testing whether it has got into the bones (Mx) – first value got by MRI scan and second by bone scan.

All in all, not a bad set of numbers that puts me in a low risk category – except for the complication of my age – did I mention I am too young for this – and my core spread but that will have to wait as I’ve had double my five minutes …

Early symptoms

Spoke to old school friend last night (Of) and told him the news. Turns out he has similar symptoms to what took me to the GP in the first place – getting up in the night to take a pee, more regularly needing to go to the toilet, more of a dribble than a gush when you first go. Also turns out his Dad, like mine, has already had surgery for an enlarged prostate, albeit benigh (aka benign prostatic hyperplasia – BPH)

For me, it was only the fact that the toilets at work were being refurbished that made really made me take notice. While things have probably been building up for the last 6 months to a year or more, it was only the fact that I could no longer nip to the loo on the way in and out the office that brought the whole issue into focus. When faced with a walk along the corridor, up the stairs, along a corridor, around the corner … and down another corridor that it really hits you that something needs to change.

That, and having an observant friend (Nf) who commented about a couple of trips to the boys room on a night out. While you can blame some of that on the beer, it was his mention of possible diabetes that made me think – yes, I really should go see the doctor. While not wanting to turn into an evangelical bore on the subject Of’s reaction was interesting – he had been worrying about it, hadn’t relished the prospect of an exam (the finger up the bottom) but I think my diagnosis might spur him into action.

Update: Of’s been off to see the doctor and everything checked out fine – so that’s him and me both reassured.