on the fence

User

Posted 18 Mar 2025 at 19:07

Thought I'd post to help anyone who finds themselves in the similar situation...

I'm 56, had urinary symptoms (night time visits to the loo etc) for several years and expected it to be probably BPH. I had a DRE a couple years back due to bowel symptoms, was advised it was "nice and smooth" which I made a mental note of. Having had health anxiety in earlier life, I do try to take a balanced approach than go off the deep end. Recently, I thought I'd ask the GP if I should have this investigated further (my mother had ovarian cancer). I was told I would have blood and urine tests prior to a f2f.

I expected the f2f to concern the pros and cons of taking PSA tests (of which I was wary). However, it turned out the blood tests included the PSA. When I had the f2f, I was advised my PSA was elevated (at 6.6) and I would be referred.

I then ploughed through most of this forum finding people's experiences of great use than consulting Dr Google.

Visited the hospital, DRE, probed and advised my vol was 55 (ie enlarged), hence a PSAD of 1.2. I was told I could have an MRI if I wanted, but there wasn't a great deal of concern shown about it. I decided it probably made sense to do so. Luckily there was a slot on the day available.

One week later, today, I had a phone call to discuss the results. Unfortunately I was out and about and not well prepared nor in an ideal setting (nor will I get the results in writing apparently). I was told, amongst other things, I had a PIRAD 3, vol of 67 (hence PSAD of 0.1) and that I could have a biopsy or another scan in 6 months.

I took the latter option and will get another PSA just prior. This is a conundrum for me. I want to progress on the basis of evidence rather than having procedures out of emotion. I haven't consulted Dr Google, but I have read EAU guidelines that suggest those with PIRAD 3 and PSAD < 0.1 have a very low risk in terms of anything clinically significant. PSAD 0.1 - 0.15 is low to intermediate risk. That puts me right on the fence.

My thinking is Bayesian, to consider prior probabilities and update them as the information comes in. So far, those probabilities have improved. I don't want to regret that later... but it is difficult to take these decisions.

User

Posted 19 Mar 2025 at 07:01

I understand how you feel as this whole “ journey” is a minefield with so many decisions to take. At the end of the day I suppose we must be guided by the specialists involved in our care. What you do know is your PSA is elevated and you are still relatively young and your prostate is enlarged. Your enlarged prostate is likely to be causing your urinary symptoms at night. Your DRE was unremarkable which is good news but many men with prostate cancer have no concerns raised when they have a DRE. Did you have a urine test and if so was it clear? A UTI can raise PSA levels. Your MRI showed PIRAD 3 which basically as I am sure you know is an equivocal result. No MRI can definitively diagnose cancer but a higher PIRAD score 4 or 5 would be more suggestive of clinically significant prostate cancer. Did they say how large the area of interest was on the MRI or provide any further details?

I must say given your age, your PSA level and MRI PIRAD 3 I am a little surprised that they are not recommending a biopsy now. However as I said at the beginning of this post you need to be guided by your specialist as no one knows other than them exactly what the MRI showed.

It is good to hear you will have a follow up PSA in 6 months and fingers crossed your PSA will have reduced. It is a little like being on Active Surveillance without a diagnosis as such.

Good Luck.

User

Posted 20 Mar 2025 at 07:47

Much appreciated thanks. Urine test showed nothing.

I'm thinking of asking for a follow up chat or f2f at the hospital. Having a noisy roadside phone call and struggling with an accent (I tend to lip read people, somewhat difficult over the phone) I tried to boil it down to the basics. It's amazing that even when the word "cancer" is uttered in such conversations, the mind wanders off temporarily before coming back into focus. It also bothers me that I'm not being sent the actual report.

Whilst I appreciate being offered options by specialists on how to proceed, it all feels terribly subjective. Scary words lead to irrational thinking.

From the empirical data I've seen (EAU risk data table for biopsy naive men), without knowledge of PSAd or PIRADS, the overall risk is 35%. Deducing the PSAd to 0.12 reduces that to 28% and an updated PSAd of 0.1, PIRADS 3 put me right on the line between two groups... an average of those two groups is 8..5%.

This leaves me (on a risk adjusted matrix for biopsy decision management) on the line of "No biopsy" and "Consider biopsy" whiich I'm averaging to 8.5%. So called "acceptable risk" spans 5% to 10%. The lowest group possible on the entire table being 3% (PSAd < 0.1 and PIRADS 1/2), which is below population risk (0-5%).

User

Posted 20 Mar 2025 at 08:01

You are right it is very subjective and you absolutely have the right to have sight of your MRI report. I would definitely ask to see that. V unfair to expect you to make an informed choice with a random phone call taken while you were you out and about.

You have obviously undertaken your research on risk. In my husband’s case his PSA was higher 9.2 and he had a very large prostate measuring at 85cc on MRI and LIKERT 4. He obviously progressed to biopsy and one tumour was identified. He had a targeted and template biopsy I think it was 24 cores. He subsequently had surgery and a further three, albeit very small, clinically significant tumours were identified.

Now you are an awful long way from thinking about surgery, you do not even know you have cancer but all the tests and the results do help to form a full picture. You are being asked to take decisions, as you have said, with very little information which I think is very unfair. It should not be left to you to research on potential risk.

Edited by member 20 Mar 2025 at 08:23 | Reason: Not specified

User

Posted 20 Mar 2025 at 08:17

There's an added problem that affects anyone in these situations that I've learned from other disciplines.

When a person is given data points, their decision making ability increases, but only up to a certain point. The more data points that are added for consideration (eg scary words or technical details) doesn't improve decision accuracy further, it only increases their confidence. This might sound good initially (eg say, peace of mind), but its actually a problem. It leads to confirmation bias, ie cherry picking the favoured data points to re-enforce a certain decision.

User

Posted 20 Mar 2025 at 09:56

So.... I called the admin team to arrange a clarification diagnostics call. The admin team advised they have a correspondence and forwarded me a letter by email that I have yet to receive in the post.

The letter In brief (from the diagnostics team)..... "MRI - PIRADS 3 changes in left PZ have a relatively low risk of suspicion and felt more likely to be inflammatory than malignant"

That does give me some confidence prior to a (hopefully) catch up call.

It does not help... and I'm sure it must a shared experience with people on this forum.... when I read the news about Eddie Jordan when pondering this.

User

Posted 20 Mar 2025 at 12:55

Sounds very positive. Yes sad news about Eddie Jordan it sounds like he was one of those men who sadly received a diagnosis very late.

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