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Do I test?

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User
Posted 25 Apr 2024 at 11:56

I have to get my PSA tested ever 3 months after my RP (please see my details).


However, not sure whether I can deal with stress of getting a score of 0.00x and then worrying about 0.00y the following reading, then being told I have BR. Also I read salvage radiation is not always successful anyway.


Do I stick my head in the sand, not do tests and only worry if my stomach hurts in a few years?


I am not being flippant, just genuinely not happy/stressed.


I wonder what your thought processes are?


Cheers 

Edited by member 25 Apr 2024 at 13:33  | Reason: Not specified

User
Posted 25 Apr 2024 at 12:43

Hi Rob,


We all know what PSA anxiety is but surely it’s better to find out sooner rather than later that it needs further treatment, leaving more options for you. Is the alternative not HT for life if it spreads and is not caught early…and I wouldn’t wish that on anyone.


Your PSA reading should be available a day or two after the blood test…find out how you can access this quickly to reduce the time you need to worry about it.


SO, in summary I would say ‘ Put Your Big Boy pants on and get the test!’💪💪


All the best,


Derek

User
Posted 25 Apr 2024 at 12:44

Rob,have your tests , don't worry about them , worrying doesn't alter the result. You may be in the surgery successful camp, stay positive, if you get a recurrence plan the next move.While you still have a chance at eradicating your cancer then have treatments.


My surgery was nearly ten years ago, I have had three goes at curative intent treatment,in a few weeks time I will get an idea of where I am now. I will  keep chasing rainbows until it becomes futile, then make those difficult decisions. Three years ago I would have been put on HT for life, attitudes / technologies have changed and I have had SABR treatment. 


 


If you refuse treatment when appropriate , will you regret it later.


 


Thanks Chris 


 

Edited by member 25 Apr 2024 at 12:46  | Reason: Not specified

User
Posted 25 Apr 2024 at 13:23
Rob, I know the feeling having had my RP and then the first PSA at <0.00 and then the second one 3 months later at 0.12 and 3 months after that at 0.19 - it kinda feels like a kick in the guts but then your sensible head comes into play and I've started on HT and have my RT scan on 06/05 and RT starts on 21/05
I feel like I am doing something positive towards a cure - I'm hoping to be in that 50% (or whatever the actual number is) and if not then I'll just tackle whatever comes up next.
Ignoring it won't make it go away and will do you no good if there is something that has been left behind.

It's just like the days when I used to go and get the post and cra*pped myself every time it was a bill or a letter from the bank manager LOL You just have to get on with it!
User
Posted 25 Apr 2024 at 13:54

I agree with everyone else. Get tested, don't worry unless you have something to worry about. I would only disagree with that opinion if you were over 80 or had some other life limiting disease. If the RP has failed and you didn't get tested you would probably go five years without knowing you had a problem. If your life expectancy were already less than five years, it probably wouldn't be worth getting tested and then treated. From your profile it looks like you are 59 so I would say definitely get tested.

Dave

User
Posted 25 Apr 2024 at 14:53

Hi Rob,


I'm about a year in front of you. I had the op  in Feb 23. I'm 8 years older than you, T3a, PSA was 7, Gleason 9 (4+5). Like you I hate PSA test anxiety, but sensibly it's got to be done mate.


To date, I've been lucky all came back undetectable and I've just booked for my fifth test post op, for May. Fingers crossed it will be good.


I don't blame you thinking  F*ck it, I'll not bother, I've thought the same myself, but really it makes no sense burying your head in the sand.


Best of luck pal.

Edited by member 25 Apr 2024 at 14:59  | Reason: Typo

User
Posted 27 Apr 2024 at 10:34

If you find the process anxiety generating, you might consider switching to 6-monthly testing instead. With Gleason 3+4, it's unlikely anything would go out of control over the extra time - if you were 4+5, then maybe worth a little more caution in that respect. NICE only requires them to offer you 6-monthly PSA tests in any case for the first 2 years, and many people at other treatment centres will be on that regime.


Some people find the frequent tests anxiety generating, while others find not having frequent tests anxiety generating. For most people, the clinical risk isn't massively different unless you are a high gleason score, positive margins, or it is increasing and needs a closer eye kept on it.

Edited by member 27 Apr 2024 at 10:35  | Reason: Not specified

User
Posted 19 Jun 2024 at 10:53

Thanks Steve, I didn't realise the first test post-op was so important. I have already booked the next test for Sep. Cheers, Rob

User
Posted 19 Jun 2024 at 14:58

Well done Rob. Great result.

User
Posted 24 Nov 2024 at 12:56

Great result Rob. I'm very pleased for you mate.👍

Show Most Thanked Posts
User
Posted 25 Apr 2024 at 12:43

Hi Rob,


We all know what PSA anxiety is but surely it’s better to find out sooner rather than later that it needs further treatment, leaving more options for you. Is the alternative not HT for life if it spreads and is not caught early…and I wouldn’t wish that on anyone.


Your PSA reading should be available a day or two after the blood test…find out how you can access this quickly to reduce the time you need to worry about it.


SO, in summary I would say ‘ Put Your Big Boy pants on and get the test!’💪💪


All the best,


Derek

User
Posted 25 Apr 2024 at 12:44

Rob,have your tests , don't worry about them , worrying doesn't alter the result. You may be in the surgery successful camp, stay positive, if you get a recurrence plan the next move.While you still have a chance at eradicating your cancer then have treatments.


My surgery was nearly ten years ago, I have had three goes at curative intent treatment,in a few weeks time I will get an idea of where I am now. I will  keep chasing rainbows until it becomes futile, then make those difficult decisions. Three years ago I would have been put on HT for life, attitudes / technologies have changed and I have had SABR treatment. 


 


If you refuse treatment when appropriate , will you regret it later.


 


Thanks Chris 


 

Edited by member 25 Apr 2024 at 12:46  | Reason: Not specified

User
Posted 25 Apr 2024 at 13:23
Rob, I know the feeling having had my RP and then the first PSA at <0.00 and then the second one 3 months later at 0.12 and 3 months after that at 0.19 - it kinda feels like a kick in the guts but then your sensible head comes into play and I've started on HT and have my RT scan on 06/05 and RT starts on 21/05
I feel like I am doing something positive towards a cure - I'm hoping to be in that 50% (or whatever the actual number is) and if not then I'll just tackle whatever comes up next.
Ignoring it won't make it go away and will do you no good if there is something that has been left behind.

It's just like the days when I used to go and get the post and cra*pped myself every time it was a bill or a letter from the bank manager LOL You just have to get on with it!
User
Posted 25 Apr 2024 at 13:32

Thanks for feedback and positive thoughts. BTW I wish I hadn't put the 50% stat in, it may not be correct. 


Thanks for replying, I realised I was asking my wife too many times (who has been very supportive) 

User
Posted 25 Apr 2024 at 13:54

I agree with everyone else. Get tested, don't worry unless you have something to worry about. I would only disagree with that opinion if you were over 80 or had some other life limiting disease. If the RP has failed and you didn't get tested you would probably go five years without knowing you had a problem. If your life expectancy were already less than five years, it probably wouldn't be worth getting tested and then treated. From your profile it looks like you are 59 so I would say definitely get tested.

Dave

User
Posted 25 Apr 2024 at 14:53

Hi Rob,


I'm about a year in front of you. I had the op  in Feb 23. I'm 8 years older than you, T3a, PSA was 7, Gleason 9 (4+5). Like you I hate PSA test anxiety, but sensibly it's got to be done mate.


To date, I've been lucky all came back undetectable and I've just booked for my fifth test post op, for May. Fingers crossed it will be good.


I don't blame you thinking  F*ck it, I'll not bother, I've thought the same myself, but really it makes no sense burying your head in the sand.


Best of luck pal.

Edited by member 25 Apr 2024 at 14:59  | Reason: Typo

User
Posted 27 Apr 2024 at 10:34

If you find the process anxiety generating, you might consider switching to 6-monthly testing instead. With Gleason 3+4, it's unlikely anything would go out of control over the extra time - if you were 4+5, then maybe worth a little more caution in that respect. NICE only requires them to offer you 6-monthly PSA tests in any case for the first 2 years, and many people at other treatment centres will be on that regime.


Some people find the frequent tests anxiety generating, while others find not having frequent tests anxiety generating. For most people, the clinical risk isn't massively different unless you are a high gleason score, positive margins, or it is increasing and needs a closer eye kept on it.

Edited by member 27 Apr 2024 at 10:35  | Reason: Not specified

User
Posted 19 Jun 2024 at 10:29

Just to let everyone know, I did get tested and it was undetectable. On to 3 monthly tests now. Thank you for your support.

User
Posted 19 Jun 2024 at 10:40
Congrats and I bet you are glad that you decided to follow through with the testing - just keep it up - it's always better to know than to have it sitting in the back of your mind festering.
User
Posted 19 Jun 2024 at 10:53

Thanks Steve, I didn't realise the first test post-op was so important. I have already booked the next test for Sep. Cheers, Rob

User
Posted 19 Jun 2024 at 14:58

Well done Rob. Great result.

User
Posted 24 Nov 2024 at 11:59

I thought I would keep the narrative as I always wonder what happened when people leave a thread.


I took my next PSA test in Sep 24 and luckily it was still undetectable.


Don't like the build up and getting the result but makes every sense to keep doing the tests.


Cheers,


Rob

User
Posted 24 Nov 2024 at 12:56

Great result Rob. I'm very pleased for you mate.👍

 
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