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User
Posted 09 Nov 2023 at 22:33

I have been trailing through this wonderful forum .... Thanks so for all the support you provide through it.  Assuredly it deserves to be celebrated.  Absolutely no question of that.  

Now, as to my own particular tale of relative woe:  I'm a 68 year old, seemingly 'British White' male with no family history that I'm aware of involving prostrate or any other associated cancer.  I had one PSA test (at MY request to the GP) 10 years ago and that came in at 1.5.  Then another one nine years later in 2022 which scored 2.2.  

I saw a BBC news feature last year in which said they were doing a trial of MRI scans for detection of prostate cancer because the PSA tests themselves had proven themselves to be fairly inaccurate in many instances.  I thought: 'I should do that'.  I knew I was too late for that trial so I called a local MRI company that I had used previously and asked if they had a prostate MRI facility amongst their offerings.  They now did.  I asked that a referral form be sent.  It was.  

I finally got a an appointment with my GP in late October '22.  I used the excuse of experiencing what I perceived to be some reduced flow.  (It was really not troubling me; nothing really significant - and I, myself, had put that down to age.)  I went in for the appointment set and the lady doctor said it shouldn't be necessary to do an MRI.  She said it wasn't her 'area of expertise' but gave me a DRE and told me that all was normal because she 'didn't feel anything'.  She told me 'not to waste my money' and sent me packing.  

I then more or less forgot about it until I read an article in the New York Times in August 2023.  I called the MRI company again and arranged a scan through paying for a interview with one of their own consultants first.  I was away on a work project in the interim and went in for the scan (a regular MRI mind, i.e., NOT an mpMRI) on 24th October of this year.  I was told that I would receive my results in three to five days.  Certainly that had been the case when I previously used them.  I was surprised, therefore, when I received both an email and call the very next day to arrange for a follow-up consultation which was, I realised, part of the package I had paid for initially.  (I suppose I had forgotten.)  They would not release the findings it seems until I had the consultation.  

I had the consultation early the next morning with a charming Irish doctor.  We chatted innocuously in the beginning before getting to the relative meat of the matter.  They had found I had a '29 ml gland with BPH in the transition zone but no concerning focus'.  (That I thought explains the somewhat reduced flow).  Then came the more difficult bit.  They had unveiled an - and I quote: '8mm focus of low T2w signal in the base peripheral zone (4 o'clock position) showing low signal on the ADC without corresponding high signal on the high b-value' and gave this a PIRADS 3 rating.  It additionally noted that 'the prostatic capsule is intact; the seminal vesicles are normal; no enlarged pelvic nodes; no destructive bone lesion'.  I suppose that was meant to be reassuring.  

There is no question but that I hadn't been expecting this.  Somewhere in my head I thought I would be told everything was AOK - as I was - indeed AM - feeling very fine in and of myself - and that I would simply go away thinking:  'Duty Done'.  This was not to prove to be the case.  Nay, very far from it. 

They had suggested that I get a 'urology referral and a PSA'.  I called my GP and got an appointment for the Monday next.  I went in and gave the nice doctor (it was his first day in this unit) my letter.  He kindly elevated me with alacrity and arranged for the PSA.  The rating for that came in at 2.75 - which would make my PSA density 0.09.      

Since the time of the MRI follow-up I seem to have become pre-occupied.  (No, NOT 'seem', I HAVE.)  I've poured though countless studies, reviewed all the treatments in detail and watched a mountain videos; some in fact twice.  I HAVE kept up with my work - I have to - which is a boon I think - but otherwise seem fairly buzzing.  One night I came in from the theatre and started to read/watch items on what now appears to be my favourite subject and suddenly looked at my watch and it was 4.20 am.  I'd simply had got carried away.  I did then brush my teeth and take my vitamins but didn't go to bed.  I just kept delving in some more thinking the next night would then help re-set the clock.  

I rapidly got an appointment with a major hospital's urology department.  Indeed I got a note with all the details of coming in but then a follow-up text telling me it would be by telephone.  Easier that way I suppose.  I so looked forward to that to get the proverbial ball rolling.  Then, on the day, it was cancelled and another appointment was given for the following week.  Yet more reviewing of materials from my end.  

I've now had that initial consultation with a practice nurse.  He simply asked the standard questions for entry until the 'pathway' and then asked me to send the report and scans from the private MRI to the team.  I dutifully did that immediately thereafter and the kind administration assistants confirmed receipt.  

Now, again, I sit and wait.  I have no idea how long it will take to have their radiologist review it and then the prostate team to discuss the findings for a potential plan.  I suppose I should have asked.  I tried to go over the findings with the nurse - I can see now from his report he already had it from the GP - but he didn't really seem to want to get into it.  He said they would review it within the lights of their own dedicated remit and if they didn't find anything significant at this juncture they would simply remove me as an item of active concern.  All was very much to the point.  

Now I don't really know which way to turn.  I'm on proverbial dry spin.  I wondered it anyone had had a report anything like mine and what in fact happened to them?  Of course I come up with all kinds of scenarios in my head - and find myself waking up at night shaking in a 'light' cold sweat.  That is simply anxiety I know.  That doesn't worry me.  It is simply human.  I'm fine when I go to bed - promise - I just that my subconscious then takes over the driver's seat.  Not always so rational I fear.  

I won't dribble on.  I've already written a little book.  (When I used to get letters at school from my mother she would write: 'If I had more time I would have written a shorter letter'.  I guess I'm just my mother's son after all.)  

Thanks so for being here.  I am most sincerely grateful for your kind consideration.    

Bruce

User
Posted 10 Nov 2023 at 01:36

I'm not a medic, so take my comments as no more relevant than if you were talking to a random guy in a pub.

I would start off by watching this video. 

https://youtu.be/yNzQ_sLGIuA?feature=shared

He has a few other videos about medical screening too. 

Well I don't want to alarm you, so wait till you've read at least the whole of this paragraph, ideally the whole post and watched the video. I think you've probably got prostate cancer. The PIRADS 3 is not the reason I think you (probably) have cancer; we have had people with PIRADS 5 and no cancer, so PIRADS 3 is not outrageous. It isn't your PSA either, 2.75 at your age isn't bad. PSA velocity is much more useful than PSA alone, but yours has taken 9 years to get from 2.2 to 2.75 so that isn't troublesome. The real clincher is that you are 68 years old, you are twice as likely to have cancer as not to have it.

The issue is whether you will ever be troubled by prostate cancer for the rest of your natural life.

The PSA test is indeed a very unreliable test if you take just one reading, and the NHS does not have time to do anymore than that. If you take regular readings then you can see how fast your PSA is increasing over time, that is a much more useful way of looking for cancer. So I think having a PSA twice a year will be enough to address your initial fears and then switch to once a year if you find it is stable.

There are a tiny number of prostate cancers which do not cause any change in PSA but these are very rare.

Men will continue to die of prostate cancer because current testing is not accurate enough to be very useful. New accurate tests are always promised to be just around the corner, but we never seem to see them come to market. The monitoring you are doing should be more than enough to catch the cancer before it becomes troublesome. The downside is it may cause more anxiety than you need.

 

Dave

User
Posted 10 Nov 2023 at 08:36
Hi Dave,

Thanks so. Obviously this is a very nice pub - one historically ripe and clearly thriving unlike so many.

As they say in the military 'understood'. Wish so I'd been able to watch that video prior to having the test.

Two benefits I did gain as I perceive them now:

(i) If I'd not done that 'screening' procedure - with all the best intents in the world mind - I would most likely NOT now be insisting on testing PSA twice a year to see where exactly on the velocity line I scored. Certainly my GP surgery would not be championing my cause in this return. The nine year interval didn't seem to bother them in the least. I wonder how they will be when I request two. Fingers crossed they will be alright. If now, I suppose I could do that privately.

(ii) If I hadn't had it, then I wouldn't have had the good fortune to meet such a fine chap as your good self. That certainly would have been my loss. Bless you for ALL.

Cheers, Bruce

User
Posted 10 Nov 2023 at 08:40

Sorry, 'not' .... or is that 'nowt'.  

Should read BEFORE I hit send!

At my age, you'd think I'd learn .... but clearly NO ... or is that 'not yet' ... Let's hope the odds favour the latter.  I'm hopeful that this particular old dog might learn at least a few new tricks.

Have a grand day.

User
Posted 10 Nov 2023 at 16:12

Just a quick question:  

As per PSA rankings (I've only had three) - 

2013 - 1.5
9/22 - 2.2
10/23 - 2.75

True, during the last one my internal anxiety level was sky high - but still ... 

I wonder if the velocity of the '22 to '23 rankings is concerning at the additional .55.  Would that be sufficient to indicate significant cancer aggression?  I did a quick search and found items which suggested that anything over .35 was worrying.  

I'd be grateful for your kind advice.  

User
Posted 11 Nov 2023 at 00:12
There are quite a number of different Prostate Cancers and some produce unusually low PSA, so this can be appricable as can the converse where men with moderately high PSA have in some cases not shown PCa, So don't set too much store by PSA, particularly before treatment.

PCa is generally slow in advancing and a wait of a few weeks wait for a more considered opinion opinion is very unlikely to make a significant difference. Ultimately, it needs biopsy to determine PCa except in very advanced cases.

Barry
User
Posted 11 Nov 2023 at 07:01

Thanks so for your kind advice, Barry.  Much appreciated.  

 
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