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User
Posted 24 Sep 2023 at 11:32

I'm one year post radical prostatectomy surgery. The hospital asked for a regular PSA test every 3 months. I always have difficulties with my GP surgery to get the blood test. Last example I come to ask for an appointment just after 3 months from last test and they tell me to come back in 2 weeks to book the blood test.

It is always a bit of stress when the time comes for another PSA test but adding the stress of having to keep asking for the appointment make me thing of trying to get a private test on top of NHS to keep my mind at rest. I remember reading somewhere here about PSA tests by post. Does anyone knows a reliable lab with capacity to do <0.01 ug/L  tests.

Thanks

User
Posted 24 Sep 2023 at 20:28

If your hospital is near enough, explain to your CNS that it's too difficult to get it through your GP, and the hospital might issue you the forms to get it done at the hospital. My hospital does drop-in blood tests, but only if the form was issued by them, not if issued by the GP. However, this varies between hospitals.

https://mypsatests.org.uk does PSA tests by post for £29 last time I looked. I tried one, and they measured down to 0.01.

 

User
Posted 26 Sep 2023 at 21:06

Your IT systems appear pretty good, the people sitting as gatekeepers less so.

I once attempted to get a test sneaked in via my GP as part of a health test. They agreed on condition I was with a Urologist.  Anyway it came back as 0.08 which was a shock as I'd been undetectable.  Fortunately my CNS agreed I could have my next test early. It came back undetectable.  My GP uses the local hospital but my blood test and operation was elsewhere, providing support to the belief you should use the same lab.  Unfortunately 9 months later at my next test it was 0,06 or detectable on the 5th anniversary from the op.  I was on annual testing but the discharge test is 5yrs after the op. I could write another paragraph about the pros and cons of that result and the testing threshold.

I'd previously considered getting a private test down to 0.01 as my hospital does 0.05.  My thinking was to find a hospital that tested that low then find a private urologist at a private hospital that used that lab.  I didn't do it as it was always when getting near the test that this idea emerged but as soon as the sample is taken I feel more relaxed, que sera, sera.

 

Edited by member 26 Sep 2023 at 21:08  | Reason: Not specified

User
Posted 02 Nov 2023 at 11:20

Many GP surgery staff are not clinicians don't have much grasp of decimal numbers, and even less so the significance of < and >. Unless they handed you a printout of the lab data (or emailed it) in a way which didn't require them to understand or transcribe it, I wouldn't bet much on it being correct.

User
Posted 19 Nov 2023 at 18:15

I’m in Scotland so goodness knows WHAT system we use…but I’m going to ask. It kind of annoys me, I go into the surgery to ask for my results, the receptionist tells me they have them but can’t tell me because the GP hasn’t reviewed them🤷🏼‍♂️ Do they NOT understand how stressful it is waiting on the results?

and then to cap it all when they DO decide to tell you they say ‘Normal’…well what use is THAT to us? So you have to ask ‘What is the actual reading?’😡

User
Posted 24 Sep 2023 at 13:54
2 weeks won't make any difference so I would stick to the GP.

Make sure you get the actual result NEVER EVER accept a GP or their staff telling you the test was "normal", with no prostate your PSA must be "LESS THAN 0.1" to be "normal"

User
Posted 24 Sep 2023 at 21:14

I don't have any problem with my GP surgery for tests, but I do always phone at least two weeks before I need the test as the nurse who takes blood only does three or four mornings a week. The surgery know I have had treatment and this is part of the ongoing monitoring. I think you have more of a problem if they think you want a screening test, as this is very low priority at most GPs and almost discouraged.

Dave

User
Posted 25 Sep 2023 at 06:09
PSA test done via GP surgery more likely to show consistency needed for follow up. Surgery should know from you records that repeats needed and interval requested by your Hospital.. Have a word with receptionist to ascertain how much prior notice needed to agree date and allow (a week in my case) for blood to be sent to lab, analysed and returned to surgery. Receptionist will not give me result until seen by my GP, so possibly another two or three days to allow for if you have a telephone appointment with hospital and they need to know. Agree some receptionists sometimes just look at your age and general PSA range and just say it's normal when in fact precise figure is required, the range for non treated men does not apply to treated men and significance of results will be judged depending on treatment individual has had and/or is currently on over time.
Barry
User
Posted 25 Sep 2023 at 07:40

Hospital Blood Test

No appointment required however I have to have the urology team create a record that I am due a test.

GP Blood Test

Have to make an appointment with GP. Still have to have urology team make the request for a blood test. Which the nurse at my practice can never find - the NHS is not joined up. But since she knows I am being regularly tested does the test anyway.

I use the NHS app to get my results. Receptionists are not medically trained and getting the result out of them can be tricky.

User
Posted 25 Sep 2023 at 14:32

It's up to your consultant how often they want PSA tests, but it has to be no longer than 6 months between tests for the first 2 years after treatment (and many consultants want it every 3-4 months instead).

User
Posted 25 Sep 2023 at 23:31

You didn't say what region you're in for recommending private blood tests.  Your note has brought out how many different procedures there are.  I was aware that some have immediate on line access to results whereas I was told it needs a certain IT system.  GP systems often don't show the < sign so you aren't told it's less than, perhaps yours does. Regards Peter

User
Posted 26 Sep 2023 at 12:31
Peter,

My hospital is in London. They use "Patient know best" website. Results are very quickly uploaded. 1 day after the blood sample. Next to the uploaded results they put the time when the patient can access them. It is usually 6 weeks after. And it's not only for the PSA. I have access to every results concerning my treatment and copies of every letters sent to my GP.

Then there is another website systmonline for the GP surgery. I know they send the blood sample to the hospital so results come also after 1day. When the results arrive on the surgery website they seem to be checked very quickly by a GP. If all is ok I can ask for a print with the receptionist or access via the website. And no one tells me anything. At some point the hospital check the results and then call me. It can be 2 weeks later. After the call they send a letter to my GP. The results are very detailed with the < sign and comments from the lab.

If I want a GP appointment it is another website: PATCHS You log in and tell why you need an appointment.

All these are via computers or apps on mobile phone. You really have to know your way through new technologies.

User
Posted 26 Sep 2023 at 21:52
To clarify, after prostate removal, yes <0.1 PSA would be normal - For people who have had RT & HT, it can be higher than that, with no cause for concern - you still have a prostate of sorts, which can produce some PSA.
User
Posted 09 Oct 2023 at 09:01

As a follow-on from this, my experience of PSA tests through the post (The pin-prick method) is that the readings are higher than they actually are. For example, in March 2018 a pin-prick test showed my PSA to be 6.26 and when I went to the doctors to discus this in May 2018 and had a blood injection PSA test it came out at 3.58. In Jan 2021 another pin-prick test produced a reading of 7.54 and the injection blood extraction one in March 2021 5.32. Having the pin-prick  test was useful in that it got me to take action (resulting in a prostate cancer diagnosis in 2021 and the removal of my prostate in December 2021) but what would have happened if the pin-prick test under recorded the actual PSA readings?

 

Ivan

Edited by member 09 Oct 2023 at 10:09  | Reason: Not specified

User
Posted 09 Oct 2023 at 09:52

Pin-prick tests are not really reliable. Generally tests carried out via the NHS can vary depending on the labs used; generally they are accurate up to two decimal places eg 0.06 and they don't seem to use the < (less than sign). Because I had my surgery privately my test results are accurate up to three decimal places, are typically < 0.003 (super sensitive test) compared with my GP (NHS) recommended test results which vary, typically 0.04, 0.06, 0.07.

 '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 09 Oct 2023 at 17:32

Mount Vernon used to measure down to 0.1 (so my oncologist always wanted me to get tested at my local district general hospital which measured down to 0.01).
Mount Vernon were reviewed by the then director of The Christie, and among many things, they were told this isn't good enough and had to switch labs so they now measure down to 0.01.

User
Posted 10 Oct 2023 at 13:20

Which is why it is best to go to the doctors and get a blood extraction PSA test with a needle. Though, as you know, a high, or low for that matter, PSA score is not a given that you do or do not have prostate cancer.

 

Ivan

User
Posted 02 Nov 2023 at 22:07

So I checked with the uro-oncology nurse today about the frequency of blood tests 1 year post surgery. Up to now it's been every 3 months. She said I need to continue with testing every 3 months until told otherwise. As long as I keep getting put on the system to receive a blood test them there are no barriers to getting one at the hospital or local practice.

User
Posted 20 Nov 2023 at 19:02

Originally Posted by: Online Community Member

I've got all the tech sites: NHS App, Patch, Patient Know Best and SystmOnline. For tests results it seems that the most reliable site is Patient Know Best. Unfortunately someone decided that I cannot see the PSA results immediately and they are visible only after 1 month.j

Hi Eric,

I'm on Patient Knows Best, for hospital records and appointments and there is at least a months delay for results.

But my GP is on Systemonline which enables me to get PSA results within 24 hours. 

I'm a firm believer that you should get your PSA results ASAP. I certainly wouldn't want to wait a month for them.

Only 2 months after my prosectomy I had a heart attack and was in a hospital ward awaiting an op. During my stay there, my urologist contacted me for a PSA test. I asked one of the nurses on the ward if she could do a blood test for me. She took a blood sample at 10pm and gave me the results at 6am the following morning. Now that's what I call service. 😀

 

 

 

 

User
Posted 20 Nov 2023 at 22:08
I take away a blood form at each Onco appointment then 2 weeks before my next appointment go to the NHS drop in centre, provide the sample and 2 days later ring the Specialist nurse in Urology who provides PSA and Testosterone numbers over the phone .

This has worked very well post COVID, however like others have said the couple of days waiting between test and results are somewhat unnerving.

Show Most Thanked Posts
User
Posted 24 Sep 2023 at 13:54
2 weeks won't make any difference so I would stick to the GP.

Make sure you get the actual result NEVER EVER accept a GP or their staff telling you the test was "normal", with no prostate your PSA must be "LESS THAN 0.1" to be "normal"

User
Posted 24 Sep 2023 at 20:28

If your hospital is near enough, explain to your CNS that it's too difficult to get it through your GP, and the hospital might issue you the forms to get it done at the hospital. My hospital does drop-in blood tests, but only if the form was issued by them, not if issued by the GP. However, this varies between hospitals.

https://mypsatests.org.uk does PSA tests by post for £29 last time I looked. I tried one, and they measured down to 0.01.

 

User
Posted 24 Sep 2023 at 21:14

I don't have any problem with my GP surgery for tests, but I do always phone at least two weeks before I need the test as the nurse who takes blood only does three or four mornings a week. The surgery know I have had treatment and this is part of the ongoing monitoring. I think you have more of a problem if they think you want a screening test, as this is very low priority at most GPs and almost discouraged.

Dave

User
Posted 25 Sep 2023 at 06:09
PSA test done via GP surgery more likely to show consistency needed for follow up. Surgery should know from you records that repeats needed and interval requested by your Hospital.. Have a word with receptionist to ascertain how much prior notice needed to agree date and allow (a week in my case) for blood to be sent to lab, analysed and returned to surgery. Receptionist will not give me result until seen by my GP, so possibly another two or three days to allow for if you have a telephone appointment with hospital and they need to know. Agree some receptionists sometimes just look at your age and general PSA range and just say it's normal when in fact precise figure is required, the range for non treated men does not apply to treated men and significance of results will be judged depending on treatment individual has had and/or is currently on over time.
Barry
User
Posted 25 Sep 2023 at 07:40

Hospital Blood Test

No appointment required however I have to have the urology team create a record that I am due a test.

GP Blood Test

Have to make an appointment with GP. Still have to have urology team make the request for a blood test. Which the nurse at my practice can never find - the NHS is not joined up. But since she knows I am being regularly tested does the test anyway.

I use the NHS app to get my results. Receptionists are not medically trained and getting the result out of them can be tricky.

User
Posted 25 Sep 2023 at 13:48

Thanks to you all. It's always good to get others experiences. My hospital offers walk in blood tests for everyone so you may be queuing 2 hours. Then they release the results via Web after 6 weeks or sometimes book a call to give me the results and ask if I have any concerns. My GP surgery told me that they cannot write in my file that I'm due for a blood test. So it's up to me to convince the receptionist. Last time she said she cannot give me the test and booked a GP appointment. This time she told me to come back at a later date. If my results are stable now after 1 year is it going to be PSA every 6 months? That will make it easier.

The benefit with the GP Surgery is that the GP gets the results after one day and if they are fine I can immediately access  to the detailed results on the Surgery patients website.

Edited by member 25 Sep 2023 at 13:54  | Reason: Not specified

User
Posted 25 Sep 2023 at 14:32

It's up to your consultant how often they want PSA tests, but it has to be no longer than 6 months between tests for the first 2 years after treatment (and many consultants want it every 3-4 months instead).

User
Posted 25 Sep 2023 at 23:31

You didn't say what region you're in for recommending private blood tests.  Your note has brought out how many different procedures there are.  I was aware that some have immediate on line access to results whereas I was told it needs a certain IT system.  GP systems often don't show the < sign so you aren't told it's less than, perhaps yours does. Regards Peter

User
Posted 26 Sep 2023 at 12:31
Peter,

My hospital is in London. They use "Patient know best" website. Results are very quickly uploaded. 1 day after the blood sample. Next to the uploaded results they put the time when the patient can access them. It is usually 6 weeks after. And it's not only for the PSA. I have access to every results concerning my treatment and copies of every letters sent to my GP.

Then there is another website systmonline for the GP surgery. I know they send the blood sample to the hospital so results come also after 1day. When the results arrive on the surgery website they seem to be checked very quickly by a GP. If all is ok I can ask for a print with the receptionist or access via the website. And no one tells me anything. At some point the hospital check the results and then call me. It can be 2 weeks later. After the call they send a letter to my GP. The results are very detailed with the < sign and comments from the lab.

If I want a GP appointment it is another website: PATCHS You log in and tell why you need an appointment.

All these are via computers or apps on mobile phone. You really have to know your way through new technologies.

User
Posted 26 Sep 2023 at 21:06

Your IT systems appear pretty good, the people sitting as gatekeepers less so.

I once attempted to get a test sneaked in via my GP as part of a health test. They agreed on condition I was with a Urologist.  Anyway it came back as 0.08 which was a shock as I'd been undetectable.  Fortunately my CNS agreed I could have my next test early. It came back undetectable.  My GP uses the local hospital but my blood test and operation was elsewhere, providing support to the belief you should use the same lab.  Unfortunately 9 months later at my next test it was 0,06 or detectable on the 5th anniversary from the op.  I was on annual testing but the discharge test is 5yrs after the op. I could write another paragraph about the pros and cons of that result and the testing threshold.

I'd previously considered getting a private test down to 0.01 as my hospital does 0.05.  My thinking was to find a hospital that tested that low then find a private urologist at a private hospital that used that lab.  I didn't do it as it was always when getting near the test that this idea emerged but as soon as the sample is taken I feel more relaxed, que sera, sera.

 

Edited by member 26 Sep 2023 at 21:08  | Reason: Not specified

User
Posted 26 Sep 2023 at 21:52
To clarify, after prostate removal, yes <0.1 PSA would be normal - For people who have had RT & HT, it can be higher than that, with no cause for concern - you still have a prostate of sorts, which can produce some PSA.
User
Posted 03 Oct 2023 at 19:56
Agree, it is a bit stressful to get the test done and wait for the results. Even if it is a bit difficult with my surgery I think it is the best option. The lab is at the hospital and my urologist will review the results and advise if they move.
User
Posted 09 Oct 2023 at 09:01

As a follow-on from this, my experience of PSA tests through the post (The pin-prick method) is that the readings are higher than they actually are. For example, in March 2018 a pin-prick test showed my PSA to be 6.26 and when I went to the doctors to discus this in May 2018 and had a blood injection PSA test it came out at 3.58. In Jan 2021 another pin-prick test produced a reading of 7.54 and the injection blood extraction one in March 2021 5.32. Having the pin-prick  test was useful in that it got me to take action (resulting in a prostate cancer diagnosis in 2021 and the removal of my prostate in December 2021) but what would have happened if the pin-prick test under recorded the actual PSA readings?

 

Ivan

Edited by member 09 Oct 2023 at 10:09  | Reason: Not specified

User
Posted 09 Oct 2023 at 09:52

Pin-prick tests are not really reliable. Generally tests carried out via the NHS can vary depending on the labs used; generally they are accurate up to two decimal places eg 0.06 and they don't seem to use the < (less than sign). Because I had my surgery privately my test results are accurate up to three decimal places, are typically < 0.003 (super sensitive test) compared with my GP (NHS) recommended test results which vary, typically 0.04, 0.06, 0.07.

 '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 09 Oct 2023 at 10:08

Interestingly enough, Addenbrookes now only test down to 0.1 as they found that small changes  in PSA readings often does not mean anything and just causes anxiety for the patient

User
Posted 09 Oct 2023 at 17:32

Mount Vernon used to measure down to 0.1 (so my oncologist always wanted me to get tested at my local district general hospital which measured down to 0.01).
Mount Vernon were reviewed by the then director of The Christie, and among many things, they were told this isn't good enough and had to switch labs so they now measure down to 0.01.

User
Posted 10 Oct 2023 at 13:11

Very interesting to see the difference with pin prick tests. That would put patients under huge stress to understand what's going on.

User
Posted 10 Oct 2023 at 13:20

Which is why it is best to go to the doctors and get a blood extraction PSA test with a needle. Though, as you know, a high, or low for that matter, PSA score is not a given that you do or do not have prostate cancer.

 

Ivan

User
Posted 02 Nov 2023 at 09:02

Finally got my results. It took 1 month to get the blood test and then 2 weeks to get the results. The 3 first blood test after surgery came back at <0.01. This time it is 0.01. So did they forgot to put the < or not. I suppose nobody is going to tell me.

They also checked my cholesterol, a bit high. If they ask me to start on statins will it be a bad idea? Could it affects the PSA blood test results?

User
Posted 02 Nov 2023 at 11:20

Many GP surgery staff are not clinicians don't have much grasp of decimal numbers, and even less so the significance of < and >. Unless they handed you a printout of the lab data (or emailed it) in a way which didn't require them to understand or transcribe it, I wouldn't bet much on it being correct.

User
Posted 02 Nov 2023 at 22:07

So I checked with the uro-oncology nurse today about the frequency of blood tests 1 year post surgery. Up to now it's been every 3 months. She said I need to continue with testing every 3 months until told otherwise. As long as I keep getting put on the system to receive a blood test them there are no barriers to getting one at the hospital or local practice.

User
Posted 19 Nov 2023 at 09:52

PSA results: my GP surgery reported my PSA at 0.01 So my question was did they forgot to put the <0.01 sign? It is 14 months post surgery and I've always been at <0.01

Anyway they asked to repeat the lipid blood test (for cholesterol). They then issued the same form including the PSA test. How can the hospital knows I only need to repeat the lipid blood test? Well, they'll know said the receptionist.

So here I go, I don't ask, the hospital take the blood test. Do the full tests again and now I have a PSA <0.01

Then one week later the first test print is finally available...and...it was <0.01 !

So I got 2 tests at 1 month interval. The results are similar but for the first test someone copy the results and forgot how important it is for us to see the < sign. 

User
Posted 19 Nov 2023 at 12:49

No problem with my GP surgery doing PSA tests. I'm on Patient know best, I can get access to all my medical records. 

Through that service I got my results within 24 hours results of them taking blood.

Adrian.

User
Posted 19 Nov 2023 at 14:51

Originally Posted by: Online Community Member

No problem with my GP surgery doing PSA tests. I'm on Patient know best, I can get access to all my medical records. 

Through that service I got my results within 24 hours results of them taking blood.

Adrian.

I wish we ALL had that to take the PSA result anxiety out of our lives😟

User
Posted 19 Nov 2023 at 16:09

Originally Posted by: Online Community Member

Originally Posted by: Online Community Member

No problem with my GP surgery doing PSA tests. I'm on Patient know best, I can get access to all my medical records. 

Through that service I got my results within 24 hours results of them taking blood.

Adrian.

I wish we ALL had that to take the PSA result anxiety out of our lives😟

Believe you me mate, I've had plenty of PSA test stress. I can remember having  tests at two local hospitals and ringing urology depts for results and no-one replying. I can remember leaving messages on the phone begging for someone to call me back with my results and no one replying.  I can remember my GP refusing to pass onto my urology consultant my PSA results due to cost implications, because they were in different Trusts.

I can remember fighting my corner until I achieved the service I now receive and deserve.

I  believe Patient knows best is a national service. Do you use it ? If not I suggest you do. If your local GP refuses to do post op PSA  results challenge the refusal.

I'm a great supporter of the NHS but sometimes their service is poor. You either settle for second class service or you demand what you're really entitled to.

Adrian.

 

 

 

Edited by member 19 Nov 2023 at 16:19  | Reason: Not specified

User
Posted 19 Nov 2023 at 16:14
'Patient knows best' is national but not all NHS Trusts use it and GPs are free to decide which system they want to have - or whether to have one at all. In our area, my Dad's GP uses SystemOnline while our GP uses Patches - our NHS Trust doesn't use either of those.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 19 Nov 2023 at 16:46

Originally Posted by: Online Community Member
'Patient knows best' is national but not all NHS Trusts use it and GPs are free to decide which system they want to have - or whether to have one at all. In our area, my Dad's GP uses SystemOnline while our GP uses Patches - our NHS Trust doesn't use either of those.

Cheers Lyn. I'm on SystemOnline and I find it brilliant. It saves hours and hours on the phone, trying to ring clinicians for results.

User
Posted 19 Nov 2023 at 18:15

I’m in Scotland so goodness knows WHAT system we use…but I’m going to ask. It kind of annoys me, I go into the surgery to ask for my results, the receptionist tells me they have them but can’t tell me because the GP hasn’t reviewed them🤷🏼‍♂️ Do they NOT understand how stressful it is waiting on the results?

and then to cap it all when they DO decide to tell you they say ‘Normal’…well what use is THAT to us? So you have to ask ‘What is the actual reading?’😡

User
Posted 20 Nov 2023 at 18:10

I've got all the tech sites: NHS App, Patch, Patient Know Best and SystmOnline. For tests results it seems that the most reliable site is Patient Know Best. Unfortunately someone decided that I cannot see the PSA results immediately and they are visible only after 1 month.

In a way, I think I'm in the lucky ones category, having had no side effects and still <0.01 results after one year.

I was on active surveillance for 3 years and still I wasn't stressed to live with cancer. Now I'm in a better situation with hopes that this cancer is gone. So as long I can access the results on my own and make sure that the < sign is on, waiting one month won't make a difference. I was thinking to sort out a better solution and asked to get an appointment with my GP but was told there was nothing available.

User
Posted 20 Nov 2023 at 19:02

Originally Posted by: Online Community Member

I've got all the tech sites: NHS App, Patch, Patient Know Best and SystmOnline. For tests results it seems that the most reliable site is Patient Know Best. Unfortunately someone decided that I cannot see the PSA results immediately and they are visible only after 1 month.j

Hi Eric,

I'm on Patient Knows Best, for hospital records and appointments and there is at least a months delay for results.

But my GP is on Systemonline which enables me to get PSA results within 24 hours. 

I'm a firm believer that you should get your PSA results ASAP. I certainly wouldn't want to wait a month for them.

Only 2 months after my prosectomy I had a heart attack and was in a hospital ward awaiting an op. During my stay there, my urologist contacted me for a PSA test. I asked one of the nurses on the ward if she could do a blood test for me. She took a blood sample at 10pm and gave me the results at 6am the following morning. Now that's what I call service. 😀

 

 

 

 

User
Posted 20 Nov 2023 at 22:08
I take away a blood form at each Onco appointment then 2 weeks before my next appointment go to the NHS drop in centre, provide the sample and 2 days later ring the Specialist nurse in Urology who provides PSA and Testosterone numbers over the phone .

This has worked very well post COVID, however like others have said the couple of days waiting between test and results are somewhat unnerving.

 
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