I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error

Post Code Lottery?

User
Posted 13 Jan 2023 at 11:58

Hello, is treatment and aftercare a bit of a post code lottery? My diagnosis was picked up by chance 4.5 years ago. I first started showing symptoms about 8-10 years ago. My father died from it aged 74 so I was aware of the dangers of ignoring it. After being examined and having a couple of PSA tests, I was prescribed medication  and referred to the hospital for more checks and was told that it was just enlarged. I had no further check ups. After a couple of years I reduced my fluid intake so that I didn't have to run to the loo so often. 4.5 Years ago, I decided to visit my GP to check that I wasn't dehydrating myself. He arranged a blood test to check my kidney function and said I should have another PSA test. The kidney function results were fine but my PSA had increased slightly. I was therefore sent for a biopsy which tested positive. After having my scans I was diagnosed as being locally advanced. It had been picked up just in time! 

A year or so before my diagnosis, a brother, 11 years my junior had also been referred for a biopsy, which proved negative.

I opted to have radio therapy and hormone treatment. I had several of the usual side effects but all seems to have gone well. Everything is more or less back to normal, considering my age, 73! I initially had 6 monthly PSA checks which have now been extended to 9 months. After my first post treatment test I'd heard nothing from my GP and had to call them for my results. They gave me the figure and said they don't normally send them out. I've had no feedback from any of my other checks. Last week, my younger brother told me that he is monitored regularly with 6 monthly PSA checks and also MRI scans every 2 years. He has been issued with a folder and kept up to date with all of his results. We live in different areas with different GP's, although we do use the same hospital. 

So does the follow up all depend on yor GP practice controlling their budgets?

 

User
Posted 13 Jan 2023 at 14:53
Some areas process information faster than others and systems do vary. I have to book my PSA tests at my GP's surgery as recommended by my hospital. I am then in a position to be able to advise the hospital when they check on me. The receptionist will not release the figure until the result has been seen by my GP. The hospital contacts me directly when they want me to have an MRI.
Barry
User
Posted 13 Jan 2023 at 16:27

My GP does a yearly PSA and in between if I ask. I get a printed report but I have to ask, but it's no problem. I guess it's a GP lottery more than postcode. I can't say that about treatment options though, that is a postcode lottery!  John

 

Gleason 6 = 3+3 PSA 8.8 P. volume 48 cc Left Cores 3/3, Volume = 20% PSA 10.8 Feb '19 PSA 1.2

Jan '20 PSA 0.3 July '20 0.1 Jan. 21 < 0.1 Dec 21 <0.01 June '22 <0.01 April '23  <0.01

User
Posted 17 Jan 2023 at 16:55
John phones the GP practice every 3 months to book his PSA test with the nurse. He then calls in a week after the PSA test and the receptionist prints off the result for him. The GP practice is notified of the result by the lab - the lab also uploads the result to his hospital record so the urologist and oncologist would be able to see it there if they wanted.

If he didn't go for the blood test, the GP practice wouldn't get in touch with him to see why he had missed it.

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

User
Posted 17 Jan 2023 at 17:18

When treatment is finished, our hospital now issues the GP with a care plan and trigger level for the PSA. 

I have never really been discharged back to my GP they seem to send out PSA test letters at random intervals. Fortunately I know what my level should be, some of the GPs don't know what a good or bad result is, one doctor asked me why I was having PSA tests when I didn't have a prostate. When I made a complaint about the doctor, I was told " that is just a weakness of the doctors knowledge". Our reception staff also seem to think they are qualified to interpret blood results. 

 

Thanks Chris 

User
Posted 17 Jan 2023 at 18:46

Yes trying to get the reception staff to convey the PSA results is difficult. They always miss the all important '<' operator.

Printing out of results is defo the way to go. Currently I cannot see my test results in the NHS App, but can see DR notes and letters.

Show Most Thanked Posts
User
Posted 13 Jan 2023 at 14:53
Some areas process information faster than others and systems do vary. I have to book my PSA tests at my GP's surgery as recommended by my hospital. I am then in a position to be able to advise the hospital when they check on me. The receptionist will not release the figure until the result has been seen by my GP. The hospital contacts me directly when they want me to have an MRI.
Barry
User
Posted 13 Jan 2023 at 16:27

My GP does a yearly PSA and in between if I ask. I get a printed report but I have to ask, but it's no problem. I guess it's a GP lottery more than postcode. I can't say that about treatment options though, that is a postcode lottery!  John

 

Gleason 6 = 3+3 PSA 8.8 P. volume 48 cc Left Cores 3/3, Volume = 20% PSA 10.8 Feb '19 PSA 1.2

Jan '20 PSA 0.3 July '20 0.1 Jan. 21 < 0.1 Dec 21 <0.01 June '22 <0.01 April '23  <0.01

User
Posted 17 Jan 2023 at 16:55
John phones the GP practice every 3 months to book his PSA test with the nurse. He then calls in a week after the PSA test and the receptionist prints off the result for him. The GP practice is notified of the result by the lab - the lab also uploads the result to his hospital record so the urologist and oncologist would be able to see it there if they wanted.

If he didn't go for the blood test, the GP practice wouldn't get in touch with him to see why he had missed it.

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

User
Posted 17 Jan 2023 at 17:18

When treatment is finished, our hospital now issues the GP with a care plan and trigger level for the PSA. 

I have never really been discharged back to my GP they seem to send out PSA test letters at random intervals. Fortunately I know what my level should be, some of the GPs don't know what a good or bad result is, one doctor asked me why I was having PSA tests when I didn't have a prostate. When I made a complaint about the doctor, I was told " that is just a weakness of the doctors knowledge". Our reception staff also seem to think they are qualified to interpret blood results. 

 

Thanks Chris 

User
Posted 17 Jan 2023 at 18:46

Yes trying to get the reception staff to convey the PSA results is difficult. They always miss the all important '<' operator.

Printing out of results is defo the way to go. Currently I cannot see my test results in the NHS App, but can see DR notes and letters.

 
Forum Jump  
©2024 Prostate Cancer UK