Confused by diagnosis

The trend is ever upward, as mine was, and if I was you I would come off AS and decide on a treatment plan.  I was on AS for around 6 months and although my  Gleason score remained the same (3+4=7) after my prostate was removed and sliced and diced my staging was increased from T2 to T3a (Because the cancer was bulging out of the prostate).

Ivan

In some ways, it doesn't matter which lab is right. For AS to be a good option, the info needs to suggest everything is stable and you have to feel confident that the AS is actually active and you are being surveilled! Neither of these seems to be case for you- lots of errors and confused dates and changes of heart / approach; no wonder you are losing faith. The cribriform would also worry me. As I said in the previous post, I don't think it is so urgent that you need to panic but, looking at your previous post your next appointment is in May and perhaps that is the right time to just say "nope, I want treatment please." I am not sure what help a new MRI and biopsy would be to you except if you were considering staying on AS which I don't think you are? 

My father-in-law died because his AS wasn't done properly so while I think it is the right of any man with low scores to choose AS and avoid / postpone treatment if he can, I am probably hyper-suspicious of hospitals that don't seem to do it properly. 

So I finally spoke to the consultant today. Whilst stopping short of saying the second opinion was wrong, she admitted there was a perfectly good chance that this was the case and that we had been misled. She also informed me that my original diagnosis of 3+4=7 from Peterborough, was given after my biopsy results were reviewed by two separate Pathologists. The SMDT decided to go with the version from the other Pathologist and downgraded my score to 6!

She fully expects my PSA level to rise again by my next test in June, at which point she will get me another MRI scan done, another biopsy for re-staging, then we can talk RARP. I questioned the 3 month wait but she said to trust her, and that it would be better to have another test result to base her advice on. I have to trust her knowledge and experience here, so didn't question her further.

Very frustrating, but it looks like I should have just cracked on with treatment back in September.

No, we had no interest in doing any of that - we just needed to understand how it happened and what the hospital would do differently in future. 

The info is on my profile but in short, Stan was on AS and his PSA dropped mysteriously - from 23 to 21 and then into single figures. We asked for new scans but these were refused - AS guidelines were that a new scan would be done if the PSA rose, not fell. We asked whether other meds (specifically, his heart meds) could cause an inexplicable drop in PSA but they said not and not to worry about it. I think in the end the PSA dropped to 2 or something like that. When he was admitted to hospital via A&E for severe oedema, a scan showed that the cancer had spread to his liver and kidneys; he died a couple of days later. It just wasn't realised that in rare cases, prostate cancer can stop producing PSA as it gets more aggressive. If we had got the scans when we asked for them, he could have started HT but the AS guidelines don't cover PSA falling - just rising.  

Edited by member 03 Apr 2024 at 20:19  | Reason: Not specified

Given today’s events, I thought it would be more useful to update this thread rather than the one I started last week.

After 4 consecutive rises in PSA, I was referred to a very well respected surgeon at a large clinic in Central London. 

He has overturned the “downgrading” of my diagnosis and so we are back at 3+4=7. He also said that given the high tumour volume (bilateral), and presence of Cribriform, this should have been dealt with last year, rather than me being offered AS.

He wants to do another detailed MRI this week so he knows what he’s dealing with, then pending the results of that, I am scheduled for surgery on July 17th.

The rollercoaster ride continues.

Ian.

Edited by member 24 Jun 2024 at 22:26  | Reason: Not specified

Thanks Adrian

No more biopsies, just straight for the op. Just depends what the new MRI shows I guess. Need to see what's been going on down there these last few months. Pretty pi**ed off to be fair, but as you say, I'm in good hands now. Although I did forget to check his shoes.....

Hi mate.

What I wish I'd done, on the run up to surgery, was to persuade the wife to join me in as much 'horizontal jogging' as possible.  😄

Unfortunately, post op, it maybe many months before you can 'do the biz' again, so make the best of it whilst you can. Plus, if you need to, it might help lose a pound or two.

Good luck buddy.

Edited by member 29 Jun 2024 at 11:14  | Reason: Typo

So I had a meeting with my surgeon this morning, who has reviewed my latest MRI results. A year ago I was diagnosed with bilateral disease, but well contained within the centre of the Prostate. I then had my Gleason score downgraded (incorrectly it turns out) and was told not to worry, it is a very slow growing cancer and I would be fine on AS.

Today I was told that I have got significant anterior disease (bilateral), and as a result of it now growing all the way to the top of the Prostate, they wont be able to do Retzius sparing surgery, or save many of the nerves. Just to add the icing to the cake, I am told that I have a small bladder sphinctre (10mm) so will experience a longer than average period of incontinence after the op.

Bit gutted, but life goes on. Surgery is on the 17th, so now need to crack on with the pelvic floor exercises.

Cheers Adrian. Yes, I think I’ll get the treatment out of the way and then decide what to do. I was categorically told when they “downgraded” my diagnosis, that I had nothing to worry about for a few years at least, and should go on AS.

I’m now told that they were wrong with their assessment when downgrading, and also that any presence of Cribriform automatically scores as a 4 at best, so it could never have been 3+3=6. Either someone didn’t read the report properly, or they are incompetent.

The only thing I don’t know now, is whether the first MRI didn’t pick up the size of the tumour, which I find unlikely as it is apparently of significant size, or whether it has grown that much in a year. If the latter, then it is clearly quite aggressive.