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User
Posted 24 Mar 2023 at 19:58

Hi 

It's been 21 months since my RP operation, I had a consultation and blood test after 3 months ( all good ) since then I have had to chase up all of my following blood tests results . I'm now on every 6 months tests ( I think ) but correspondence, consultations and the arrangement of blood tests have now stopped, I am having to call the Consultants secretary to remind them that I'm still needing tests. 

Question I have is, what's normal? Should I be having to do this ? I'm now only getting the results when I phone up, i.e there's no follow up correspondence or consultation any more.

How long after an RP do I need to have blood tests for? I'd be surprised if after only 21 months I'm fully clear and off the books ?   

User
Posted 26 Mar 2023 at 11:05

Yours is a salutary tale as mine was. Many years ago,  12 Years, I had noticed that  my PSA had raised considerably from one year to the next even though it was within 'my age range', as described by my GP. As an engineer I regarded the rate of rise more significant than the absolute value but when I raised this with my GP she told me not to worry because my PSA was well within the range. So I saw another GP who thought I was being over anxious and too analytical! However, as we have private health insurance, I managed to bypass the surgery and saw a urologist who very quickly investigated via MRI and decided to carry out a biopsy and my Gleason score was 3+4 (good) and 4+3 (not good). I had robotic prostatectomy 12 years ago and the rest is history. I am afraid medical education is mostly teaching of facts, symptoms, and diagnosis. Unless there is a sufficient understanding of scientific methods we will continue to experience these simplistic diagnosis - this is not to say that our GPs and consultants don't do a very good job on the whole, given the pressures.

 'Physics is like sex: sure, it may give some practical results, but that’s not why we do it.'                    Richard Feynman (1918-1988) Nobel Prize laureate

 

 

User
Posted 24 Mar 2023 at 22:27
I think most men have been passed back to their GP surgery for PSA monitoring by your stage, Trev. You need to speak to your GP practice to arrange the next one, perhaps, and then clarify whether the urologist can access the results remotely or whether you or the GP would need to email the urologist's secretary each time you get a result? It is normal to stay on the urologist's books but to not see him / her anymore unless there is a problem.

It is common practice to have 3 monthly tests for the first year after the post-op PSA (so up to 15 months post-op) and then, assuming results have remained <0.1 to move to 6 monthly tests until 5 years post-op and then annual. You will need annual PSA testing for the rest of your life.

In John's case, once PSA testing was handed to the GP practice, it was our task to arrange the test at the right time, get the results from the GP receptionist and email the consultant's secretary with the result. if there is any issue or rise, we can arrange an appointment with the consultant directly via his secretary.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 25 Mar 2023 at 07:18

It will depend on your local area what the followup monitoring arrangements are.

In my area, the hospital does it until you've been stable for 5 years. In some areas, they arrange to hand it back to the GP much sooner, together with detailed instructions on when to refer back to hospital. There's also personal stratified followup where patients who are considered able to do so arrange their own testing (via GP or hospital) and refer themselves back.

Your consultant's secretary or your CNS should be able to tell you what should be happening.

Whatever method your area uses, you should not rely on NHS admin getting it right. Understand what should be happening, and go and chase it up if it doesn't.

User
Posted 25 Mar 2023 at 08:42

Trev, out hospital now follows the same protocol as Andy.

You still need to know what your PSA should be and take responsibility for your own testing. Too many GPs and receptionist are telling guys their PSA is normal because they are misunderstanding the lab results.

 

Thanks Chris 

User
Posted 26 Mar 2023 at 00:51

Apart from my husbands first 2 post op PSA tests I’ve arranged them all for him. Usually every 3 months but I’m doing 6 weeks at the mo because of slight rise. I phone a blood number to book him in and then the gp surgery to request a blood bag and pick it up, his results come straight onto his NHS app. We then have the same situation as Lyn where I email the consultant. We paid private for robs op because he wasn’t offered it on the NHS so it’s the private consultant that I email. We do still get approx 6 monthly appointments with our local NHS urology department too though. We attend these to maintain different opinions and it’s a more straightforward route if rob needs more treatment. 

I prefer doing it this way…but maybe that’s the control freak in me 🤦🏻‍♀️😂

 

User
Posted 26 Mar 2023 at 02:48

Hi Trev, for me in Manchester, I was having post RT followups every six months. It was my responsibility to get a PSA test at the GP surgery about two weeks before each follow up and then take it to the appointment. I don't have to get blood forms or blood bags, I think on the very first occasion the receptionist asked why I was booking the test, I said "hospital requested it" and since then I can just ask for a PSA test whenever I want. Now I am signed off from the consultant, I organise a PSA test every six months. If the PSA changed rapidly I would talk to my GP and ask to be referred back.

Andy is right, do not rely on NHS bureaucracy, and never accept a GP or receptionist saying your PSA is "normal". Normal is considered <2.9 but that is only normal if you have a prostate, post RP your PSA is only normal if it is <0.1 most GPs don't understand that.

Dave

User
Posted 26 Mar 2023 at 12:09

My experience is that the GP receptionist tries to block my blood test every time. I then have a run around...

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User
Posted 24 Mar 2023 at 22:27
I think most men have been passed back to their GP surgery for PSA monitoring by your stage, Trev. You need to speak to your GP practice to arrange the next one, perhaps, and then clarify whether the urologist can access the results remotely or whether you or the GP would need to email the urologist's secretary each time you get a result? It is normal to stay on the urologist's books but to not see him / her anymore unless there is a problem.

It is common practice to have 3 monthly tests for the first year after the post-op PSA (so up to 15 months post-op) and then, assuming results have remained <0.1 to move to 6 monthly tests until 5 years post-op and then annual. You will need annual PSA testing for the rest of your life.

In John's case, once PSA testing was handed to the GP practice, it was our task to arrange the test at the right time, get the results from the GP receptionist and email the consultant's secretary with the result. if there is any issue or rise, we can arrange an appointment with the consultant directly via his secretary.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 25 Mar 2023 at 07:18

It will depend on your local area what the followup monitoring arrangements are.

In my area, the hospital does it until you've been stable for 5 years. In some areas, they arrange to hand it back to the GP much sooner, together with detailed instructions on when to refer back to hospital. There's also personal stratified followup where patients who are considered able to do so arrange their own testing (via GP or hospital) and refer themselves back.

Your consultant's secretary or your CNS should be able to tell you what should be happening.

Whatever method your area uses, you should not rely on NHS admin getting it right. Understand what should be happening, and go and chase it up if it doesn't.

User
Posted 25 Mar 2023 at 08:42

Trev, out hospital now follows the same protocol as Andy.

You still need to know what your PSA should be and take responsibility for your own testing. Too many GPs and receptionist are telling guys their PSA is normal because they are misunderstanding the lab results.

 

Thanks Chris 

User
Posted 26 Mar 2023 at 00:51

Apart from my husbands first 2 post op PSA tests I’ve arranged them all for him. Usually every 3 months but I’m doing 6 weeks at the mo because of slight rise. I phone a blood number to book him in and then the gp surgery to request a blood bag and pick it up, his results come straight onto his NHS app. We then have the same situation as Lyn where I email the consultant. We paid private for robs op because he wasn’t offered it on the NHS so it’s the private consultant that I email. We do still get approx 6 monthly appointments with our local NHS urology department too though. We attend these to maintain different opinions and it’s a more straightforward route if rob needs more treatment. 

I prefer doing it this way…but maybe that’s the control freak in me 🤦🏻‍♀️😂

 

User
Posted 26 Mar 2023 at 02:48

Hi Trev, for me in Manchester, I was having post RT followups every six months. It was my responsibility to get a PSA test at the GP surgery about two weeks before each follow up and then take it to the appointment. I don't have to get blood forms or blood bags, I think on the very first occasion the receptionist asked why I was booking the test, I said "hospital requested it" and since then I can just ask for a PSA test whenever I want. Now I am signed off from the consultant, I organise a PSA test every six months. If the PSA changed rapidly I would talk to my GP and ask to be referred back.

Andy is right, do not rely on NHS bureaucracy, and never accept a GP or receptionist saying your PSA is "normal". Normal is considered <2.9 but that is only normal if you have a prostate, post RP your PSA is only normal if it is <0.1 most GPs don't understand that.

Dave

User
Posted 26 Mar 2023 at 11:05

Yours is a salutary tale as mine was. Many years ago,  12 Years, I had noticed that  my PSA had raised considerably from one year to the next even though it was within 'my age range', as described by my GP. As an engineer I regarded the rate of rise more significant than the absolute value but when I raised this with my GP she told me not to worry because my PSA was well within the range. So I saw another GP who thought I was being over anxious and too analytical! However, as we have private health insurance, I managed to bypass the surgery and saw a urologist who very quickly investigated via MRI and decided to carry out a biopsy and my Gleason score was 3+4 (good) and 4+3 (not good). I had robotic prostatectomy 12 years ago and the rest is history. I am afraid medical education is mostly teaching of facts, symptoms, and diagnosis. Unless there is a sufficient understanding of scientific methods we will continue to experience these simplistic diagnosis - this is not to say that our GPs and consultants don't do a very good job on the whole, given the pressures.

 'Physics is like sex: sure, it may give some practical results, but that’s not why we do it.'                    Richard Feynman (1918-1988) Nobel Prize laureate

 

 

User
Posted 26 Mar 2023 at 12:09

My experience is that the GP receptionist tries to block my blood test every time. I then have a run around...

 
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