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1 year post prostatectomy, slight rise

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User
Posted 02 Jun 2024 at 22:03

I'm now a year on from my RP and 2 months ago my PSA went from <0.01 to 0.02. Since I'm within the first 2 years I will be getting tested every 3 months and up to recently I was also getting a phone call from the Urologist to give me the result. But on the last blood test when the result went to 0.02 this phone call didn't happen and what's really annoyed me is they kept me in suspense for a month before the NHS app finally unlocked the PSA value, presumably after Urology was supposed to contact me. Why lock you out? When the Urologist did last call me 4 months ago he got his facts wrong and said he'd speak to me in 6 months time. I felt like saying to him....Do me a favour before you ring clients who are on tenterhooks read the patients file and get your facts straight...you're getting paid enough!


Do you guys who've had RP get to talk to Urology every 3 months for the first 2 year i.e. do they call you?


If no to above then if there are changes should they not call you to discuss possibilities/reassure?


Why oh why lock the result on the NHS app until the Urologist is supposed to call you? Can I have this changed so I see the result straightaway?


 

User
Posted 03 Jun 2024 at 14:46

For the first 2 years post op I had PSA tests at my GP every 3 months and my surgeon called me to discuss the result and any other issues I may have had. Now, this is done on a 6 monthly basis and I am anxiously waiting the result of this morning's PSA test as my level has been rising slowly. If it continues to rise my surgeon has advised that he will refer me to his radiologist colleague. All test results have been classed as 'normal, no action required' by my GP. Frankly, I take no notice and make sure I see the lab report myself. 


 

User
Posted 02 Jun 2024 at 22:03

I'm now a year on from my RP and 2 months ago my PSA went from <0.01 to 0.02. Since I'm within the first 2 years I will be getting tested every 3 months and up to recently I was also getting a phone call from the Urologist to give me the result. But on the last blood test when the result went to 0.02 this phone call didn't happen and what's really annoyed me is they kept me in suspense for a month before the NHS app finally unlocked the PSA value, presumably after Urology was supposed to contact me. Why lock you out? When the Urologist did last call me 4 months ago he got his facts wrong and said he'd speak to me in 6 months time. I felt like saying to him....Do me a favour before you ring clients who are on tenterhooks read the patients file and get your facts straight...you're getting paid enough!


Do you guys who've had RP get to talk to Urology every 3 months for the first 2 year i.e. do they call you?


If no to above then if there are changes should they not call you to discuss possibilities/reassure?


Why oh why lock the result on the NHS app until the Urologist is supposed to call you? Can I have this changed so I see the result straightaway?


 

User
Posted 02 Jun 2024 at 23:20

As far as I'm aware the urological staff have the power to grant you immediate access. It's a simple matter of ticking an electronic box.  It was the wonderful surgical associate who did that for me. He also got me my pathology findings from my op in good time. It was one day less than the third week anniversary when I received the good news. None of this two months waiting. Surely that would do nothing but actually unduly challenge the patient's recovery. Counter-intuitive from my perspective - especially when it needn't be.

User
Posted 02 Jun 2024 at 23:58

Gerry, I unfortunately developed a urethral stricture so was in constant contact with my  consultant for the first three years, we were on first name terms. NICE did change their guidance on testing from 3 months to six months even in those first two years. I was fortunate that we had a team of urology nurses at the end of the phone for things like blood test results. 


I had two vials of blood drawn at the same time and tested at the same lab with a difference of 0.01. 


You could perhaps manage to get your bloods taken by your GP surgery and gets the results alot quicker .I have an online system at our GP surgery and also use the NHS app. In our area the consultant can see tests the GP asks for but the GP cannot see tests the consultant asks for,unless it is sent to the GP.


I know how frustrating it is when you can't get the service you expect. I don't think some medical professionals think about the mental health of their patients.


Thanks Chris 

User
Posted 03 Jun 2024 at 00:49

I have not spoken to urology since the last meeting to discuss the path report 8 weeks post surgery ( and that was


2 & 1/2   yrs ago) . I went private for the surgery because of the wait on covid and could not get back on to the nhs for monitoring and was discharged.  I have to sort out my own blood test and get the results on the nhs app ( 3-4 days). I presume a GP or nurse will look at the results to check that it is normal but no one ever calls fom the surgery. Incidently, they think its normal for me to have a psa between 0-3.39.


I presume if my PSA starts going up , I will need to contact GP to refer me back to Urology. 


May be you can ask then to authorise access to your results as soon as it is uploaded by the lab. 

User
Posted 03 Jun 2024 at 08:34

Originally Posted by: Online Community Member
Do you guys who've had RP get to talk to Urology every 3 months for the first 2 year i.e. do they call you?


I had RP, telephonic consultations every 6 months, PSA checks every 3 months.


I got my GP surgery to do my PSA blood tests. They are on systmonline. I can access my result within 24 hours.


I'm 16 months post op my PSA has been <0.02 which is the lowest our laboratory measures to. Your's is a minimal rise. 


I  have been disappointed by poor clinician - patient communications, I've become very proactive in my own monitoring.


Best of luck mate.

User
Posted 03 Jun 2024 at 09:54

Originally Posted by: Online Community Member


I presume a GP or nurse will look at the results to check that it is normal but no one ever calls fom the surgery. Incidently, they think its normal for me to have a psa between 0-3.39.


I presume if my PSA starts going up , I will need to contact GP to refer me back to Urology. 



I have just started an official complaint procedure with my GP for constantly saying my PSA is normally when it isn't. What was you latest PSA , for a man after surgery a PSA above 0.2 will usually trigger either investigation or treatment. Don't rely on your GP and don't accept "it's normal" get the actual results. 


Thanks Chris 

Edited by member 03 Jun 2024 at 12:21  | Reason: Spelling

User
Posted 03 Jun 2024 at 12:08
Thanks Chris,

Luckily I have a bit of medical background and proactive in my own management and surveillance. I feel for those that are let down by the system and have fallen through the cracks which can easily happen.
Its a bit of a pain, as I have to explain myself every 6 months to the receptionist/nurse that I need to have another PSA as part of my monitoring. I just don't understand why it can't be highlighted on their system or better still automated repeat PSA ( frequency dependent on your situation). I know for a fact, if I didn't contact for a PSA test, I will never get a call or reminder to do this.

My PSA has fortunately remain <0.01 ( the lowest the lab measures) . Interestly, the GP surgery patient app has this recorded as 0.01 but the NHS app states <0.01 from the start.
I rarely look at the GP app anymore.
User
Posted 03 Jun 2024 at 15:18
I know it doesn't help but oh boy are the French systems so much better in comparison.
If I have my blood test at 10am, the results are in my inbox by 4pm.
I am sent a CD every time I have a CT scan, MRi, Scintigraphy or X-ray with all of the images on and I can log into the portal at any time to see them, alongside all prescriptions as well as all of the surgeons post op notes, histology report and GPs notes.
It's my information and it's freedom of information that you should have the same access to it.
User
Posted 05 Jun 2024 at 10:03

And just to prove the point in my previous post, my PSA result was posted on the NHS website yesterday (very quick). It came back as 0.16 'normal, no action'. Never mind the rising trend and the fact I have no prostate, as long as it is less than 4.9 then that's just fine with them. I too feel a formal complaint coming on. 

User
Posted 05 Jun 2024 at 11:01

plexx09.


It's disgraceful. Yet no-one ever seems accountable. Over two years ago, I started a complaint with my Trust regarding errors made in my treatment. The tried fobbing me off with various contradictory excuses. In the end I took it to the Parlimentary Health Service Ombudsman. They took 6 months to take action and threw it back to the Trust to respond. That was 6 months ago and I'm still awaiting their response. The NHS complaints system is a joke.


Best of luck mate.

Edited by member 05 Jun 2024 at 11:25  | Reason: Additional text

User
Posted 05 Jun 2024 at 11:27

No need to be concerned Adrian. I watched the debates on TV last night. They all promised to fix the NHS. So there you have it - job done! 


Peter


 

User
Posted 05 Jun 2024 at 14:26

Originally Posted by: Online Community Member


It came back as 0.16 'normal, no action'. Never mind the rising trend and the fact I have no prostate, as long as it is less than 4.9 then that's just fine with them.


Totally agree - that is in no way "normal" - 4.9 might be fine for someone who has a prostate but post RARP you want to see that magic "<" sign. A level of .16 any time after RARP is something to be taken seriously as once you get to 0.2 then further treatment is needed. Good luck!

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User
Posted 02 Jun 2024 at 23:20

As far as I'm aware the urological staff have the power to grant you immediate access. It's a simple matter of ticking an electronic box.  It was the wonderful surgical associate who did that for me. He also got me my pathology findings from my op in good time. It was one day less than the third week anniversary when I received the good news. None of this two months waiting. Surely that would do nothing but actually unduly challenge the patient's recovery. Counter-intuitive from my perspective - especially when it needn't be.

User
Posted 02 Jun 2024 at 23:58

Gerry, I unfortunately developed a urethral stricture so was in constant contact with my  consultant for the first three years, we were on first name terms. NICE did change their guidance on testing from 3 months to six months even in those first two years. I was fortunate that we had a team of urology nurses at the end of the phone for things like blood test results. 


I had two vials of blood drawn at the same time and tested at the same lab with a difference of 0.01. 


You could perhaps manage to get your bloods taken by your GP surgery and gets the results alot quicker .I have an online system at our GP surgery and also use the NHS app. In our area the consultant can see tests the GP asks for but the GP cannot see tests the consultant asks for,unless it is sent to the GP.


I know how frustrating it is when you can't get the service you expect. I don't think some medical professionals think about the mental health of their patients.


Thanks Chris 

User
Posted 03 Jun 2024 at 00:49

I have not spoken to urology since the last meeting to discuss the path report 8 weeks post surgery ( and that was


2 & 1/2   yrs ago) . I went private for the surgery because of the wait on covid and could not get back on to the nhs for monitoring and was discharged.  I have to sort out my own blood test and get the results on the nhs app ( 3-4 days). I presume a GP or nurse will look at the results to check that it is normal but no one ever calls fom the surgery. Incidently, they think its normal for me to have a psa between 0-3.39.


I presume if my PSA starts going up , I will need to contact GP to refer me back to Urology. 


May be you can ask then to authorise access to your results as soon as it is uploaded by the lab. 

User
Posted 03 Jun 2024 at 08:34

Originally Posted by: Online Community Member
Do you guys who've had RP get to talk to Urology every 3 months for the first 2 year i.e. do they call you?


I had RP, telephonic consultations every 6 months, PSA checks every 3 months.


I got my GP surgery to do my PSA blood tests. They are on systmonline. I can access my result within 24 hours.


I'm 16 months post op my PSA has been <0.02 which is the lowest our laboratory measures to. Your's is a minimal rise. 


I  have been disappointed by poor clinician - patient communications, I've become very proactive in my own monitoring.


Best of luck mate.

User
Posted 03 Jun 2024 at 09:54

Originally Posted by: Online Community Member


I presume a GP or nurse will look at the results to check that it is normal but no one ever calls fom the surgery. Incidently, they think its normal for me to have a psa between 0-3.39.


I presume if my PSA starts going up , I will need to contact GP to refer me back to Urology. 



I have just started an official complaint procedure with my GP for constantly saying my PSA is normally when it isn't. What was you latest PSA , for a man after surgery a PSA above 0.2 will usually trigger either investigation or treatment. Don't rely on your GP and don't accept "it's normal" get the actual results. 


Thanks Chris 

Edited by member 03 Jun 2024 at 12:21  | Reason: Spelling

User
Posted 03 Jun 2024 at 12:08
Thanks Chris,

Luckily I have a bit of medical background and proactive in my own management and surveillance. I feel for those that are let down by the system and have fallen through the cracks which can easily happen.
Its a bit of a pain, as I have to explain myself every 6 months to the receptionist/nurse that I need to have another PSA as part of my monitoring. I just don't understand why it can't be highlighted on their system or better still automated repeat PSA ( frequency dependent on your situation). I know for a fact, if I didn't contact for a PSA test, I will never get a call or reminder to do this.

My PSA has fortunately remain <0.01 ( the lowest the lab measures) . Interestly, the GP surgery patient app has this recorded as 0.01 but the NHS app states <0.01 from the start.
I rarely look at the GP app anymore.
User
Posted 03 Jun 2024 at 14:46

For the first 2 years post op I had PSA tests at my GP every 3 months and my surgeon called me to discuss the result and any other issues I may have had. Now, this is done on a 6 monthly basis and I am anxiously waiting the result of this morning's PSA test as my level has been rising slowly. If it continues to rise my surgeon has advised that he will refer me to his radiologist colleague. All test results have been classed as 'normal, no action required' by my GP. Frankly, I take no notice and make sure I see the lab report myself. 


 

User
Posted 03 Jun 2024 at 15:18
I know it doesn't help but oh boy are the French systems so much better in comparison.
If I have my blood test at 10am, the results are in my inbox by 4pm.
I am sent a CD every time I have a CT scan, MRi, Scintigraphy or X-ray with all of the images on and I can log into the portal at any time to see them, alongside all prescriptions as well as all of the surgeons post op notes, histology report and GPs notes.
It's my information and it's freedom of information that you should have the same access to it.
User
Posted 03 Jun 2024 at 22:28
Gerry, I do agree that someone should have spoken to you given your PSA moved above the undetectable value. In my case it was the excellent specialist nurse.

Your current figure isn't a cause for alarm, but it is a cause for closer monitoring to see if it continues increasing (and if necessary acting accordingly).
User
Posted 05 Jun 2024 at 10:03

And just to prove the point in my previous post, my PSA result was posted on the NHS website yesterday (very quick). It came back as 0.16 'normal, no action'. Never mind the rising trend and the fact I have no prostate, as long as it is less than 4.9 then that's just fine with them. I too feel a formal complaint coming on. 

User
Posted 05 Jun 2024 at 11:01

plexx09.


It's disgraceful. Yet no-one ever seems accountable. Over two years ago, I started a complaint with my Trust regarding errors made in my treatment. The tried fobbing me off with various contradictory excuses. In the end I took it to the Parlimentary Health Service Ombudsman. They took 6 months to take action and threw it back to the Trust to respond. That was 6 months ago and I'm still awaiting their response. The NHS complaints system is a joke.


Best of luck mate.

Edited by member 05 Jun 2024 at 11:25  | Reason: Additional text

User
Posted 05 Jun 2024 at 11:27

No need to be concerned Adrian. I watched the debates on TV last night. They all promised to fix the NHS. So there you have it - job done! 


Peter


 

User
Posted 05 Jun 2024 at 14:26

Originally Posted by: Online Community Member


It came back as 0.16 'normal, no action'. Never mind the rising trend and the fact I have no prostate, as long as it is less than 4.9 then that's just fine with them.


Totally agree - that is in no way "normal" - 4.9 might be fine for someone who has a prostate but post RARP you want to see that magic "<" sign. A level of .16 any time after RARP is something to be taken seriously as once you get to 0.2 then further treatment is needed. Good luck!

User
Posted 07 Jun 2024 at 11:43

Quick response to my GP complaint explaining that the 'normal' designation referred to the normal range for men with a prostate (the primary reason for my complaint!) and pointing out that just beneath that comment, the report was notated with 'under the care of urologist'. Now, why didn't I see that notation before my complaint? 

User
Posted 13 Jun 2024 at 23:26

Well I'll be phoning the Urology Dept tomorrow and will be requesting the PSA tests be carried out by my GP and I just know I'll have to remind them to also make an appointment for a telephone consultation with my forgetful Urologist. I will also be asking that results get posted to my NHS app immediately.


 


Apologies for not replying sooner but sometimes it's tempting to bury my head in the sand and pretend this isn't happening :(

Edited by member 13 Jun 2024 at 23:28  | Reason: Not specified

User
Posted 13 Jun 2024 at 23:54

Just ask your GP for a printed copy of the blood report. Hopefully should sidestep the red tape as I drive in for mine once I’ve phoned to check it’s ready.

User
Posted 20 Jun 2024 at 17:47
Well I was in contact with my uro-oncology nurse and when I asked about why the PSA test outcome is not released straightaway to my NHS app and I was told it was because it had a 'tumour' marker on it and therefore they don't release the result until the specialist has spoken to me.
Anyone know if this is correct? I'm in Sussex.
User
Posted 20 Jun 2024 at 18:01

My PSA test was posted same day to the app. But the blood was taken at my GP surgery and tested by an external lab. 

User
Posted 20 Jun 2024 at 19:19

Was this your quarterly/6 monthly or just a one off test? I'm assuming NHS.

Edited by member 20 Jun 2024 at 19:19  | Reason: Not specified

User
Posted 20 Jun 2024 at 20:14

It was my regular test. Yes NHS.


Peter

User
Posted 20 Jun 2024 at 23:01

While it's annoying it can't be released immediately and it doesn't make sense and I may pursue it with the specialist, I will see. What does annoy me is the fact at the moment I'm having to chase them to get things done.

 
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