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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.👍

User
Posted 12 May 2025 at 00:12

Hi just had undetectable result and so now onto 6mth checks. Cheers everyone.

User
Posted 12 May 2025 at 09:16

Hi Rob.

Great result mate. Long may they continue.👍

 Although my PSA  has been undetectable for almost 27 months, I'm currently still  having  checks every three months. I've got another later this week. I book my own tests so I think I could have them whenever I wanted. However, I might email the surgeon and see if he thinks it would now be in order for me to get checked every 6 months.

 

 

User
Posted 12 May 2025 at 15:09

Hi jonnybran.

I wouldn't worry too much about a raised Gleason score following your op, it often happens. What I'd be asking is, what's  my cancer staging, and have I got negative margins?

Your level of fitness should aid a good recovery. Good luck mate.👍

 

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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.👍

User
Posted 21 Jan 2025 at 13:18
Just had 3 mthly PSA check, still undetectable.

Good luck everyone

User
Posted 21 Jan 2025 at 13:24

Great result Rob, long may they continue. 👍

Thanks for continuing to update us.

User
Posted 21 Jan 2025 at 13:42

Thanks Adrian,

Are you on 6 monthly checks now?

Rob

User
Posted 21 Jan 2025 at 14:07
I think anxiety varies with the individual. I would imagine everybody has some trepidation, particularly early on but over the longer term providing it is stable, it is less prominent in your mind. I forgot I had a PSA test before Christmas and only remembered to get the result because I am due to get the result of my 2 yearly MRI this afternoon and will be asked what my most recent PSA is. It was 0.05 incidentally, so I anticipate I will be told again I am in remission (but take nothing for granted). If PSA does increase in a meaningful way I will again be looking at results and trends more carefully.

So give it time and hopefully you will take testing as just something you should do as routine.

Barry
User
Posted 21 Jan 2025 at 14:54

Thanks Barry, it sounds as though you are in a good place. All the best, Rob.

User
Posted 21 Jan 2025 at 15:24

Originally Posted by: Online Community Member
Are you on 6 monthly checks now?

Not at the minute mate. I'm coming up to two years post op and if my next PSA comes back  undetectable.  I was hoping to get tests only every six months but I was Gleason 9, so I'm not sure.

Edited by member 21 Jan 2025 at 15:26  | Reason: Not specified

User
Posted 12 May 2025 at 00:12

Hi just had undetectable result and so now onto 6mth checks. Cheers everyone.

User
Posted 12 May 2025 at 09:16

Hi Rob.

Great result mate. Long may they continue.👍

 Although my PSA  has been undetectable for almost 27 months, I'm currently still  having  checks every three months. I've got another later this week. I book my own tests so I think I could have them whenever I wanted. However, I might email the surgeon and see if he thinks it would now be in order for me to get checked every 6 months.

 

 

User
Posted 12 May 2025 at 13:57

Hi I’m 10 weeks post RARP surgery and have my 12 week PSA scheduled at the end of the month. With this in mind is there anything I should be looking out for in terms of the result? I spoke to the surgical consultant who upgraded my Gleason to 8 (4+4) after the pathology report, but I completely forgot to ask about the PSA and what is a good reading post surgery. I think I was too preoccupied on trying to understand what the upgraded Gleason meant. I feel fine 10 weeks on and have started swimming and running again with no immediate issues, so fingers crossed 🤞 

User
Posted 12 May 2025 at 15:09

Hi jonnybran.

I wouldn't worry too much about a raised Gleason score following your op, it often happens. What I'd be asking is, what's  my cancer staging, and have I got negative margins?

Your level of fitness should aid a good recovery. Good luck mate.👍

 

User
Posted 02 Nov 2025 at 09:58

Hi all. Just had my 6 monthly test - undetectable.

So that's 20 months post RP.

Can't get too confident but I can finally see a bit of light at the end of the tunnel.

Cheers

Rob

 

User
Posted 02 Nov 2025 at 10:09

Hi, Rob

Thanks for the update, mate. It's a great result and long may they continue.👍

 
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