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User
Posted 11 Jan 2023 at 23:20

I had my last PSA test with my consultant in August 22, it was still unrecordable. I was then asked if I wished to transfer to the above unit. It is nurse led and I get my results two days after the test, by phone. I happily agreed although I hope no one got a promotion for coming up with the name.

My question is, on the letter from them it said, ‘PSA testing is for life’. This was news to me, I remember being told after my surgery that testing would stop after a number of years. ‘In fact’, the nurse said, ‘many men find stopping testing very nerve-wracking, it’s like a comfort blanket’.

Any comments? I get my first results from them tomorrow and have a few questions to ask. The initial leaflet said a full history of my treatment and side effects would be compiled, to personalise my treatment. When I emailed about this I was told, ‘don’t bother’.

It’s a joint MacMillan/NHS unit and my experience of both leaves a lot to be desired.

 

Rob

User
Posted 11 Jan 2023 at 23:20

I had my last PSA test with my consultant in August 22, it was still unrecordable. I was then asked if I wished to transfer to the above unit. It is nurse led and I get my results two days after the test, by phone. I happily agreed although I hope no one got a promotion for coming up with the name.

My question is, on the letter from them it said, ‘PSA testing is for life’. This was news to me, I remember being told after my surgery that testing would stop after a number of years. ‘In fact’, the nurse said, ‘many men find stopping testing very nerve-wracking, it’s like a comfort blanket’.

Any comments? I get my first results from them tomorrow and have a few questions to ask. The initial leaflet said a full history of my treatment and side effects would be compiled, to personalise my treatment. When I emailed about this I was told, ‘don’t bother’.

It’s a joint MacMillan/NHS unit and my experience of both leaves a lot to be desired.

 

Rob

User
Posted 12 Jan 2023 at 12:59

Phoned them up today and got the results. She told me the figure and I said, ‘great, still unrecordable.’ She replied, ‘more specific than that, it’s less than 0.01’. Which is more specific than before, as it was <0.1.

I’m now on six monthly tests until the five year mark, next year, when it goes to annually.

 

Rob

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User
Posted 12 Jan 2023 at 08:40

Some areas will put you back to the GP after so many years. I think it was 5 years in my area.

Testing for life is an unfortunate fact of life with PC although if you get to 20 years after a prostatectomy you can probably say you are cured.

You can of course unilaterally decide to stop testing but while you still have curative options that would probably be rash but it's an option I know people take.

Edited by member 12 Jan 2023 at 08:40  | Reason: Not specified

User
Posted 12 Jan 2023 at 09:14
They told me I would be monitored for the rest of my life, I feel comforted by this.
User
Posted 12 Jan 2023 at 09:35

I’m not particularly fussed about being tested for life,it’s simply having been told at the start of this journey that testing would end its come as a bit of a surprise. I’d already said to my wife that when testing ended I’d probably pay for some private testing for peace of mind.

User
Posted 12 Jan 2023 at 10:39

This is going to be up to you to some extent. Testing generally goes out to 10 years at an annual level but you can continue asking for it after that. There's no point in testing past the point where no treatment would be offered, which would be last 3-5 years of life.

Edited by member 12 Jan 2023 at 11:01  | Reason: Not specified

User
Posted 12 Jan 2023 at 12:59

Phoned them up today and got the results. She told me the figure and I said, ‘great, still unrecordable.’ She replied, ‘more specific than that, it’s less than 0.01’. Which is more specific than before, as it was <0.1.

I’m now on six monthly tests until the five year mark, next year, when it goes to annually.

 

Rob

 
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