I joined a couple of months ago to ask a biopsy question and folk here were very helpful. I said at the time I'd respond later with my experiences so far in case anyone is interested. Here goes:
Firstly, I hit 65 and with no symptoms and no family history I thought I'd breeze though my first PSA test. I've been a runner for 30 years so I'm reasonably fit. No fears ... Wrong. PSA of 6.7.
MRI scan showed moderately sized tumour at apex, right up against the prostate capsule. T2 and Likert 5.
Biopsy 3:4, so seemingly not that bad as it was contained - supposedly. No chance of focal treatment, so I chose to have my prostate removed. Surgery was 3 weeks ago.
Histology today showed the cancer had in fact escaped (T3), but as I'd agreed with the surgeon to excise widely to try and contain any potential escaping cancer, I seem to have got away with it as the histology indicated negative margins.
The subsequent PSAs will determine whether any malignant cells have escaped, possibly during surgery.
Oddly this "journey" has not been especially stressful. I would not have expected this. Many times I have asked myself why this is. I did the obvious research and asked around, but the responses I got varied widely. I slowly realised that much of the info on the web and others' experiences were often out of date. Things are moving quickly with prostate cancer and what I read from only a few years back was not now relevant and frequently misleading. We know catching this disease early is important, but the more I discovered about it, the more I began to appreciate that many/most (?) men diagnosed with this disease these days, even at later stages in the disease's progression, can hope that it can be either cured or be kept under control for many years. I fully appreciate this is not always the case and some men sadly do not have this experience.
Obviously I have some way to go with my disease, but the realisation that treatments and an ever improving understanding of the quality of life versus risks equation are improving rapidly, did help me a lot to get to this stage without too much negative panic.
So to anyone still reading this I'd say, do your research. Get clued up at each stage about all the possibly paths that you may end up following, BUT - and this is key - try not to get too distracted by old data and don't panic if you possibly can. Be prepared. Perhaps set your mind to position your head in the middle ground - not worse case or not being lucky and getting a 3:3 and escaping treatment. This will allow some mental wiggle room when the diagnosis is received. And remember to get as many medical opinions as you can for your own particular case. Everyone is different and generalised and dated opinions can be especially unhelpful.
I won't attempt to comment on the joys of the biopsy, the surgical experience, nor the subsequent plumbing issues - personally I'm having a hard time with leakages. There's a ton of views to read about individuals' experiences, but as we're all different I can't see I can add much.
Good luck ...
If anyone is interested in this I'll post again with my experiences further down the line, even if I end up having to have radiotherapy for any escaped cells.
PS. I'm trying to embrace this post-operative recovery time. Walking several miles a day, avoiding most jobs (my supportive wife has helped enormously by picking up the slack) and spending hours escaping with books, audiobooks and painting - all of which I rarely allowed myself time to enjoy before this. Trying to keep positive having set my mind to thinking that with this annoying gland, now removed, won't be able to bother me ever again. Hopefully ...