Hiya John
I'm not sure that we're supposed to name particular hospitals as effectively we would be naming the surgeons but it was an NHS hospital in the South West. I have only the highest praise for the care I received from the very beginning - they have been truly incredible.
To answer your question about symptoms, when I think back I probably suffered urinary issues for as many as 10 years before diagnosis. I began to notice things like being the only person on short haul flights getting up to use the bathroom more than once and having to strategically time loo breaks during cinema and theatre visits and still being anxious about needing to go again during performances. My bladder never felt completely empty and I experienced weak flow, difficulty starting and nocturnal interruptions but all of these symptoms crept up on me over time.
Because the symptoms got imperceptibly worse, I assumed it was just the natural process of ageing and I wasn't overly concerned although by 2016 I decided to get a PSA test as part of a routine medical I needed for my employment. That came back as 4.85 and I was advised to contact my GP who organised a couple of tests of his own which I believe gave similar results and he referred me to the urologist at my local hospital.
The urologist gave me a DRE and was very reassuring that it was probably benign and nothing to be concerned about. He suggested annual PSA tests would be sufficient and I didn't receive an MRI at that time. I did another blood test in 2019 but I never received any result or feedback and with hindsight I suspect the test became lost in the system.
Throughout COVID it was difficult to get blood tests and to be honest, I had been reassured enough that I wasn't in any particular hurry to get another one because I didn't feel that my symptoms were enough of a problem to warrant TURP or regular medication. I was interested in the new steam (Rezum) treatment that the NHS adopted around 2020 and thought that perhaps at some point in the future I might enquire about it but I was feeling pretty relaxed.
Finally in March of this year (2022), five years after my initial urology visit, I contacted my GP for a new PSA test and this came back at 5.1 and the subsequent confirmation test was 9.1 which triggered my MRI appointment and subsequent biopsy.
Mentally for me the hardest period was after the MRI result which was graded as T3a. Once I understood the significance of that I became quite overwhelmed by the enormity of the news and the seemingly limitless amount of information, advice, choices and possibilities that I was faced with. In some ways however, it actually helped me to understand that because of the relatively advanced stage, my choices would be quite limited. I actually believed that surgery would not even be offered to me.
I am quite good at recognising things that I cannot control and then parking those whilst focusing on things that are within my control. I actually found that the waiting between each stage (for example it took 6 weeks to get my biopsy result) to be quite useful as it gave me time to adjust to each new reality.
I realised that I should make the most of this time because it was all still my life and after all, it's for that life that we all want to be cured. I focused on keeping fit and I deliberately took "cancer holidays" where I would grant myself long weekends or even weeks where I would not discuss the subject, not research the subject and try not to think about it.
A good example of my ability to do this came when I was waiting for my bone scan result after I'd had my biopsy result consultation. I had gone away for the weekend and my specialist nurse very kindly called me on a Friday evening because she'd received the result and wanted to let me know that it was negative immediately so that I could enjoy my weekend. I was very grateful for her kindness but in all honesty, I had managed to put it so far out of my mind that I had genuinely forgotten that I was even waiting on the result of the scan!
Since my surgery, I've been incredibly fortunate to have encountered a speedy return to physical wellbeing with pretty much complete continence again. Having received my post-operative PSA test and histology results, I feel much as I did before I was even diagnosed. ED is obviously still an issue but I'm optimistic that this well resolve in time. Once again I am simply focusing on the things that are within my control - staying fit and trying to enjoy my life. I cannot possibly control what the future holds in terms of recurrence and so there is no point wasting my energy worrying about it - if I get a bad PSA test result in the future, then I will have plenty of opportunity to do my worrying then.
After I was first diagnosed, I came to this website and also attended a local support group in order to try to gain an understanding of what it meant to have this disease. Really I wanted to find a way through and by far the most inspiring, hopeful and helpful thing was meeting a chap at the support group, who was a few months ahead of me and had already had his surgery. He looked a picture of health, had a positive outlook and really gave me a glimpse into a possible future. Practically he really helped me just by being someone to discuss what to expect and advise on things that he wished he had known before surgery. He gave me useful tips and advice which were really encouraging.
It was this experience that prompted me to post on this forum about my own experience and my top tips. It's exactly what I would have wanted to read during my darkest hours following my diagnosis. I'm genuinely shocked and saddened by some of the response it has generated which has focused on the possibility of recurrence. In my opinion, this is not a helpful focus for anybody coming to grips with a fresh diagnosis. I'm shocked too that I received criticism for recounting my own experience of using increasingly long walks to aid my mental and physical recovery as soon as I could after my operation. It has been an invaluable route to recovery for me and I'm sure would benefit others.
I'm sorry to hear that you have struggled mentally. There is good support available through the NHS and the likes of Maggie's and Macmillan and I sincerely wish you the best for a continued recovery mentally and physically.
All the very best.