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Decision to do nothing

User
Posted 09 Jan 2023 at 03:54

As hormone therapy begins to do its work, I ponder as to what would have happened if I had decided to do nothing. Gleason 8 (3+5). PSA 10.6. No symptoms until after my biopsy, when I now have nocturia and yes it is very annoying.


Could I have done nothing? Could I have waited for a couple of years? In truth, had it not been for the fact that I had a routine blood test I would be unaware of my stowaway, hiding deep in the hold.


I may be incorrect but I believe that my nocturia is a direct consequence of my biopsy or at the very least it has significantly increased since then.


 


Gabriel

User
Posted 09 Jan 2023 at 06:09

It seems extremely unlikely that the biopsy is to blame. A biopsy does no permanent damage to anything.


Best wishes,


Chris

User
Posted 09 Jan 2023 at 09:21

Did you have a transrectal biopsies? A close friend of mine had that and has had nothing but problems since then with infections and other issues. I had mine through the perinium which I think is much less prone to problems.


strange then that the gold marker seeds were inserted through the rectum but I suppose it’s much less invasive 🤷‍♂️

User
Posted 09 Jan 2023 at 09:53

I asked the same question a few months ago, although this was about whether or not I should have a biopsy. I am now 75 & first went through the diagnostic process in 2020 when no cancer was found. My last PSA was 19.2 although I am on finasteride so that needs to be doubled.


I went ahead with my second biopsy & was blessed with acute urinary retention a few hours following discharge. I received my biopsy results last week - 39 'cores' taken & again no cancer found.


The reality is that we both understand that there is something 'wrong', you have been diagnosed & I have not - but I still recognise that there is probably something that isn't quite right. You are a fair bit younger than myself so as I see it you protecting your future is more important than me protecting mine. I went ahead with my second biopsy on the basis that if I didn't I wouldn't be aware of any risk of metastasis - mind you I don't aim to have a biopsy again !


The trouble with all of this is that once you commit to your first PSA test 'logic' tells you to continue. I still have problems at night, but if I get only twice I tend to regard it has having been a good one.


All the best

User
Posted 09 Jan 2023 at 10:49

Looking at your bio they found quite a lot of cancer and some of it was grade 5. Putting your details into this tool:


https://prostate.predict.nhs.uk/tool


Suggests you had a 60% chance of reaching 75 and now you have a 70% chance. If cancer had not been found it would have been 85%.


Clearly not having cancer was the best option but that is not on the table. Leaving it a few more years before treatment would be called active surveillance; with your biopsy results that is unrealistic. Even treating you now, is only giving you a 10% extra chance of living to 75 in another couple of years the disease may have progressed far enough that treatment would increase chances only 5%.


So doing nothing would probably have resulted in you getting to 70 with no side effects, followed by 5 years of managing terminal cancer, and those 5 years would be a lot worse than what you are going through now.


You still have a high chance of having to manage that terminal disease but you will probably be nearer 80 when you get there, and plenty of other things might kill you first.


Now in hindsight it may have been better not to have had that blood test. If your philosophy of life is, live fast: die young, then having medical tests is a bit foolish.


NICE guidelines say a PSA test should be decided in consultation with a GP. That consultation should establish if there is any point in you knowing you have cancer. 


 


 

Dave

User
Posted 10 Jan 2023 at 05:31

Dave's answered your thought about doing nothing but a couple of points about nocturia ...


Hormone therapy has the obvious result of knocking out testosterone and libido but it clearly does other things like messing with your sleep and your head.


I'd suggest you do the kegel exercises to strengthen relevant muscles but regardless, it's reasonably likely that you'll find you have to get up one or more times during the night as a result of the treatment you're going through. I found waking up and needing to urinate had an annoying tendency to form a vicious circle. I'd wake up and the thought that I might need to go, or that it might help me get back to sleep if I did, meant that I went to the toilet when I really didn't need to, at night.


It being 4.5 months since my last Zoladex shot I'm struck by the mental changes that are happening as the last dregs of the stuff leave my system and before testosterone comes back [it it does]. Try not to be too swayed by the lunacy of an ADT addled brain. When all of this is over you will come back to a much more normal state than you might think possible right now.


Jules


 

 
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