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Waiting for Follow up appointment after RP Surgery

User
Posted 01 Jan 2019 at 21:01

Hello

my husband had RP 5/6/18 surgery was sucessful post PSA 0.0003 in Aug , should have been seen again by surgeon in Nov for his PSA follow up 

but still waiting for NHS appointmrnt apoarently clinics are 2 months behind !!!

in meantime its worry worry ...seens if your a male cancer patient its o k t be ignored and no support offered 

really let down no point in raising awareness when you left to go it alone once your diagnosed

User
Posted 02 Jan 2019 at 13:11
It should be every 3 months for at lest the first year (but more usually for 2 years) post-op. If the PSA remains undetectable, most surgeons would then be okay with it going to every 6 months until 5 years and from then on, an annual test. Obviously, if the PSA rises over 0.1 then 3 monthly testing continues.

In some areas, the surgeon isn't involved after the first couple of tests and so all results are sent to the GP and yes, you are usually entitled to a print out of the result - although some GP practices might say it is unnecessary, there have been lots of examples of practice receptionists not understanding either the 'less than' sign or decimal points :-(

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

User
Posted 01 Jan 2019 at 23:09
I assume he has been to the GP in the meantime to arrange another PSA test? Some men only see the surgeon once, for the 6 week check up and then all care is trandsferred back to the GP so a bit of a delay, while disappointing, is not going to do any harm as long as his PSA is below 0.2

What kind of support was he hoping to get from the surgeon?

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

User
Posted 02 Jan 2019 at 09:53
Hi Monkeymad

I would ring the GP today and get an appointment. They can do a blood test form for a PSA test which as you say is overdue now. Great news about the August one but looks like the system for kerping him checked is awry. I would be very insistent that the GP gets the PSA test sorted.

In order to see the consultant you can ask the GP to re - refer and then see what the ‘choices’ system options are.

Alternatively you could ring the consultants sectretary and tell her/ him you are overdue.

I would probably ask the GP to re refer and also ring his secretary until I had an appointment

Hopefully the appointment will then tie in with the PSA result coming to the GP ( Be aware members on here have had to be pushy to get the correct number from the GP. I insist on hard copies of all test results so I have them in my file. ) I would make another appointment with the GP therefore in order to discuss/ get a copy of the results and also keep the GP abreast of what is happening re the hospital clinic.

Even with your great August PSA result the importance of looking out for the mental health of cancer patients and families seems to have got forgotten. Feeling you are abandoned by the system is not a good mental place to be and once they have recommended the treatment and follow up protocol they really are failing you if they don’t stick to it.

I am sure the next PSA test and follow up will continue to be positive but it looks like you are going to need to take charge of the process.

Good luck and let us know

Clare

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User
Posted 01 Jan 2019 at 23:09
I assume he has been to the GP in the meantime to arrange another PSA test? Some men only see the surgeon once, for the 6 week check up and then all care is trandsferred back to the GP so a bit of a delay, while disappointing, is not going to do any harm as long as his PSA is below 0.2

What kind of support was he hoping to get from the surgeon?

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

User
Posted 02 Jan 2019 at 09:53
Hi Monkeymad

I would ring the GP today and get an appointment. They can do a blood test form for a PSA test which as you say is overdue now. Great news about the August one but looks like the system for kerping him checked is awry. I would be very insistent that the GP gets the PSA test sorted.

In order to see the consultant you can ask the GP to re - refer and then see what the ‘choices’ system options are.

Alternatively you could ring the consultants sectretary and tell her/ him you are overdue.

I would probably ask the GP to re refer and also ring his secretary until I had an appointment

Hopefully the appointment will then tie in with the PSA result coming to the GP ( Be aware members on here have had to be pushy to get the correct number from the GP. I insist on hard copies of all test results so I have them in my file. ) I would make another appointment with the GP therefore in order to discuss/ get a copy of the results and also keep the GP abreast of what is happening re the hospital clinic.

Even with your great August PSA result the importance of looking out for the mental health of cancer patients and families seems to have got forgotten. Feeling you are abandoned by the system is not a good mental place to be and once they have recommended the treatment and follow up protocol they really are failing you if they don’t stick to it.

I am sure the next PSA test and follow up will continue to be positive but it looks like you are going to need to take charge of the process.

Good luck and let us know

Clare

User
Posted 02 Jan 2019 at 12:23

Thankyou Clare for your thorough explanation of what needs to be done 

Gp will be contacted today to request a psa blood test .

my husband aged 55 and last year lost his elder brother aged 62 to PC and his father in hus 80’s also had the  same although didnt have any treatment .

His worry is that hes seemingly left to the shambles of the hospital system and me having to chase up departments who are struggling to process patient care .

im afraid as a male there are just not the same kind of care and support that is offered for a female with breast cancer or might just be we are the unlucky ones 

regards for your reply

User
Posted 02 Jan 2019 at 12:43
No problem

With our system we can get an on the day GP appointment but we have to take the blood form to the local hospital where they have a 'take a ticket' system.

I have had bloods taken so quickly that I was in and out in the free 15 minute car parking time! ( but have also had to settle down for a wait, so always take a book!)

If you could get bloods taken today it would be fab but appreciate all GP surgeries operate slightly differently.

The consultants secretary may well be back at work today and i have always found them very helpful if you can get through to the right person...do a bit of googling to find who it is.

However i wouldn't rush for an appointment without PSA results at this stage; but thats my opinion. We are lucky and BUPA fund my husbands monitoring so we have learnt now to get an early morning blood test and the results then take 4 hours so we book an afternoon appointment with the consultant as my husband prefers her to give him the result.

With the NHS PSA test I think a wait is inevitable but i would ask the GP how long is normal until the results hit the surgery and then try to get a clinic appointment for as soon as possible after. I believe you are entitled to ask for a hard copy if you are prepared to go in and pick it up. (I could be wrong here).

As my husband still has his prostate I am not sure how often then your husband should expect to be tested but there are a lot of experienced post RP guys on here who will advise ( there probably is a NICE guideline).

Good luck

Clare

User
Posted 02 Jan 2019 at 13:11
It should be every 3 months for at lest the first year (but more usually for 2 years) post-op. If the PSA remains undetectable, most surgeons would then be okay with it going to every 6 months until 5 years and from then on, an annual test. Obviously, if the PSA rises over 0.1 then 3 monthly testing continues.

In some areas, the surgeon isn't involved after the first couple of tests and so all results are sent to the GP and yes, you are usually entitled to a print out of the result - although some GP practices might say it is unnecessary, there have been lots of examples of practice receptionists not understanding either the 'less than' sign or decimal points :-(

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

User
Posted 02 Jan 2019 at 13:45
I had my RP at the end of March, and was told more or less the same as in LynEye's first paragraph.

I've been able to worry less as each 3 month blood test approaches!

User
Posted 02 Jan 2019 at 15:01

I have a number of PSA blood test request forms.

I go to the chemists to give a sample, and the result appears simultaneously next day at my GP surgery and on my EMIS Patient Access app on my iPad.

Why is it so complicated elsewhere in the country?

Cheers, John

User
Posted 02 Jan 2019 at 16:19

Wow thats a really efficient system!

im afraid we’re in the dark ages and have only managed to be seen once since RP in june 18 .

Its been a bad experience all along but on the positve side no waterwork probs 👍

 

User
Posted 02 Jan 2019 at 16:35

MM

Our hospital had the Davinci robotic equipment installed in early 2014 and set up a nurse led robot clinic, the surgeon consultant sees patients at six weeks. First year tests are every three months with an appointment with one of the uro onco nurses Second year test are six months with telephone appointments with the nurses . Blood tests can be done at our surgery or hospital and they go to the same lab.  If there is a problem you get to see the consultant. If I have a problem I can ring the uro onco nurses for advice and they can get me in to see a consultant.

Thanks Chris

User
Posted 05 Jan 2019 at 18:15

Thats a brilliant system ,! thats how i imagined our treatment post op would be ,but sadly its been fend for ourselves since sent home from his operation .i see that each persons experience varies and we are gratfeful for the surgery but the rest of the time has been bordering on a comedy of errors its a good job we are both young and can see the funnyside of all the bloopers thats come our way thanks for your input cheers !

User
Posted 19 Mar 2019 at 10:35
This is really useful I've been massively impressed with the speed of sorting stuff on the NHS especially fitting around me being an awkward sod. Initial GP visit was on the 10th Jan, diagnosis results on the 4th March which i think is pretty rapid.

I'll make a note to make sure stay on top of testing post op if that's the end result or whatever treatment I end up with. There are loads of queue system drop in clinics in the area so getting the blood tests done is a matter of timing and patience when you go and wait. Getting to see the GP can be an issue.

User
Posted 19 Mar 2019 at 11:16
After surgery my GP gave me a year’s worth of PSA test forms (I also have a photocopier😉).

I go to the local chemist, the phlebotomist takes a blood sample and the result appears on the EMIS Patient Access app on my IPad first thing the following day. Couldn’t be simpler.

I understand that this kind of regime and EMIS access is not nationwide. Why not?

Cheers, John.

User
Posted 19 Mar 2019 at 14:12

Originally Posted by: Online Community Member

I understand that this kind of regime and EMIS access is not nationwide. Why not?

Simply because individual GP practices have to sign up for it and get all the IT set up. This is obviously easier to do for a large multi-GP practice who can employ an IT manager than it is for a one-man-and-his-dog practice (which do still exist!).

Cheers,

Chris

 

User
Posted 19 Mar 2019 at 14:45

Originally Posted by: Online Community Member

Originally Posted by: Online Community Member

I understand that this kind of regime and EMIS access is not nationwide. Why not?

Simply because individual GP practices have to sign up for it and get all the IT set up. This is obviously easier to do for a large multi-GP practice who can employ an IT manager than it is for a one-man-and-his-dog practice (which do still exist!).

Cheers,

Chris

My mate goes to a single GP practice, who has a walk-in open surgery from 9-11 each weekday and timed appointments thereafter. Tom says he rarely waits more than ten minutes for a walk-in.

We however, attend the ’biggest practice in Coventry’, which has numerous G.P.s (often transient), all of whom seem to be part-time, and the surgery is only open 4 1/2 days a week!

I just booked an appointment on-line for Her Loveliness for some time in April, the earliest available. I do get my PSA results through next day though.......

Cheers, John.

User
Posted 19 Mar 2019 at 18:34

Originally Posted by: Online Community Member

Originally Posted by: Online Community Member

I understand that this kind of regime and EMIS access is not nationwide. Why not?

Simply because individual GP practices have to sign up for it and get all the IT set up. This is obviously easier to do for a large multi-GP practice who can employ an IT manager than it is for a one-man-and-his-dog practice (which do still exist!).

Cheers,

Chris

GP practices are private companies; there is little that can be imposed on them. GP practices can choose from 4 digital systems, they are not forced to buy the same system used in their local hospitals. Hospitals (NHS trusts) have rather more than 4 to choose from. 

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

 
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