Just musing.....
My Bio outlines my original diagnosis and treatment starting in early 2021. There's little detail about my starting point beyond psa no. and Gleason, for the simple reason that I don't think I ever received any. Certainly nothing like that which folk on here relate - tumour size etc.
I didn't come "here" or any similar Forums. I was told a curative objective and I took that at face value if without any great conviction - hey the forecast 5 years survival good enough! And I have just about reached that target. Didn't give much thought to the disease, especially once the 12-weekly decapeptyl injections ended. Certainly no psychological issues.
Knowing little, my very pleasant, happy, life just rolled on.
No symptoms until July 2025 and then only the psa increase. The GP totally misunderstood the numbers. Had I taken "Normal. NFA" at face value my life would have just continued to roll happily on until....it didn't. Ignorance would probably have been a better QoL, if a little shorter. I have for example not taken holidays, because I know that I don't have the time to save more money for the kids.
The psa was still relatively low and the Man pretty upbeat about many treatment choices - until he saw the PSMA PET pictures, which did not correlate with the 4.5 psa.
For the appointment following the PSMA PET he didn't bother seeing me in person when obvious that no meaningful treatment "choice". Maybe he just doesn't like giving bad news! A Registrar who was clearly out of his depth shuttled between me and the boss relaying vague answers to what few questions I had and made no attempt at reassurances!
If I'd accepted GPs statement I could have avoided all this bother, fuss and wasted time.
However, this time I had/have done my own research and joined this excellent group. Was this a good use of my limited time? Rather wish I'd followed my original philosophy - what will be....
Original diagnosis (or at least the bit I was told) couldn't have been the whole story. Compounded by ineptitude of GP monitoring. The extent of my mets indicates that psa will not give any real guide to progression. Perhaps better if I didn't know that e.g. the Oncology Registrar's view that the very quick, very large, reduction in psa and testosterone after only a few weeks of treatment was a good sign was, deliberately or from ignorance, plain wrong for low secreting cells.
I do not however seem to have any of the mental health, worries, emotional issues that one might expect with Stage 4, advanced metastatis, HT only option, disease. Maybe it's the lack of symptoms, other than meds side effects, that make me so, well, resigned. I fear the painful and degrading last few months (and yes I've seen that with my late wife), but not the conclusion.
The incidence of death from, not the oft repeat "with", PCa is often misrepresented, giving %ages of all deaths, not of those diagnosed. Once Stage 4 advanced metastatic, survival estimates seem to be generally 2–3 years, but this varies widely based on whether the cancer is sensitive or resistant to hormones. Not knowing this probably "better"?
Judging by psa (possibly actually relevant in early stages of progression), I've already had at least a year of that median!
Bit rambling but my conclusion is that beyond a certain age, say early 70s, MAYBE leave things be. Be ignorant. Don't pursue details or knowledge, simply consumes time and energy. I keep being drawn to this site, but all I learn is a downer. Time and thinking could be better spent e.g. building a bike more suited to working around the side effects of my meds!
Anyone else feel the same?
Good luck all.
Dave.
Dave (Carl28 )
You've had a bad deal from the professionals who are there for you - your wife died of cancer and I am so sorry you have been there to see that. I feel for you.
At the moment you are well - you now have the knowledge to know where you are with your personal diagnosis. We have Community members with Stage 4 on here 8/10 years past their diagnosis date still going strong.
We can all "ramble" - I do it on a regular basis - this cancer had it's go at killing me 4 years ago - I am still here, and yes I am here to fight your corner. Ditch the negative attitude, forget leaving money to the kids, it's your life, just get on with it -build your carbon fibre bike frame and get riding, give yourself a new target - it's doable - you aren't dead yet!
Believe me, when you are in hospital on Christmas Day as an emergency admission and the doctor says "well you are sorted now - you will be around for Boxing Day" - life becomes precious.
Embrace what you have - get those positive vibes going and get on 'yer bike!
Here endeth today's lesson (these are my personal thoughts - not Macmillan advice 
).
Believe it or not I am here to support you - you CAN do this!
Kind Regards - Brian.
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
Strength, Courage, Faith, Hope, Defiance, VICTORY.
I am a Macmillan volunteer.
Dave,
I've followed your musings for some time and the latest is indeed thought provoking. I guess we all have our own views depending on who we are, our experiences, personal circumstances and attitude to life.
Your post provoked me to reflect on my approach and as far as I'm concerned I'll be fighting all the way. I say that for a few reasons.
Foremost is that I've always been a fighter and health wise this started in 2014 when I got lung cancer. In the few years before this I lost a couple of close friends to the same and, as I was going through the diagnosis process myself, my father-in-law was in the final stages of the same disease. It wasn't easy taking him to hospital appointments and watching him slowly deteriorate then standing at his funeral looking at my distraught wife, an only child who adored her father, with thoughts going through both our minds that I was probably next. That fired my fighting spirit like never before. I was lucky, was given surgery to remove my right lung plus chemo and am a rare long term survivor - 12 years this summer.
Fast forward to 2016, I got prostate cancer and had RT/HT then the bloody thing recurred in 2024. Still, better than the lung cancer recurring. Given 3 options for treatment I went for the max again, triplet therapy - chemo, indefinite HT and darolutamide. The permanent side effects are not good, but I'm still alive and kicking.
That's how it is, not easy but doable and for now it allows us to spend about half the year abroad in warm sun.
So, very different views on the treatment front but also some similar traits. For example we share a similar relationship with the drink. I too was an enthusiastic participant, the proverbial legend in his own lunchtime throughout my successful career who let it spill over into his personal life (but fortunately a "happy" drinker). Nothing to be proud of but I enjoyed it immensely. Stopped drinking for 2 years when I retired and can now successfully enjoy a couple so long as I take care and don't let the habit re-form.
However on the health front, after the fights I've had health wise I'll continue to fight fiercely to the end which hopefully will not be for several years yet.
I have a feeling there are more fighters than non-fighters here but others might have a different opinion?
All the best,
Derek.
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
Dave, I respect your views of course.
It sounds like your GP is a bit like mine. Well done on the win.
Derek.
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
