Phoning for post op PSA results

User

Posted 29 Mar 2016 at 13:13

Last week, I had my PSA test, 6 weeks after the prostatectomy, and was advised to phone the GP surgery back this afternoon.

I guess I should have waited 'til late afternoon, not just after mid-day.

I thought that rather than go and call at the GP surgery I'd phone. Staying at home, I wouldn't then have to deal with the effects of walking and today's anxiety making my incontinence worse. At home I would be able to take in any not so good news without the distraction of wetting myself. So I 'phoned.

' We have it, but I can't give it you as there isn't a comment on it from the GP'.

Last week they give me a urine test for UTI results over the 'phone. Putting the 'phone down after saying I'd call later, I went into panic mode.

So now comes the wait..

I wish they'd standardise how they do things , and maybe warn you, pre PSA test, that they won't give results until reviewed by the GP.

I've read a few posts on here and clearly this is how it is generally. I suppose my worries are something I've just got to live through.

I'm off to pace about and go for another wee!

User

Posted 29 Mar 2016 at 17:15

Originally Posted by: Online Community Member

Just had the result- but the receptionist on the phone gave me a scare - she said 'It's below 3.0, so that means it's OK'. ( I explained that was if I had a prostate..)

Finally got to the figure, <0.1.

Hope you don't mind me sharing that bit of news.

Phew!

Good news indeed!

You must have had a scare when she said it's below 3.... http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif

Not sure why you have to prise this info out of receptionists all the time.... It can be very misleading

Luther

User

Posted 29 Mar 2016 at 18:55

Hi Walnut,

I posted this on another thread yesterday:

You can easily find out what your ... PSA test results are, but you need to be cute and ask the right questions.

The results are normally back at the GP's surgery within a couple of days of the test.

Every time I phone my GP's surgery and ask for the result the receptionist allways tells me my PSA was 'normal'.

I then have to say to her, 'there should be a number, what is the number?' and then she tells me.

Honestly it is like deja vue, Ground Hog day, exactly the same conversation every 3 months.

The health professionals do worry about how they break the news to us. A couple of years ago I was 'interviewed' by one of our Oncology nurses who as part of her nursing degree course, (might even have been a PhD) was doing a formal study in how to break the news of biopsy results. Quite a lot of people thought it best to do it face to face at a Consultants appointment. However I told her that I thought it was best over the phone, after all by the time you have a TRUS biopsy, the concept that you may have PCa is hardly unexpected, you will have started to do your research, and all you really want to know is the Gleason score and T stage. The idea that you should wait at home for a couple of weeks, knowing that the result is already known, is not far short of torture.

Dave

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User

Posted 29 Mar 2016 at 17:05

Just had the result- but the receptionist on the phone gave me a scare - she said 'It's below 3.0, so that means it's OK'. ( I explained that was if I had a prostate..)

Finally got to the figure, <0.1.

Hope you don't mind me sharing that bit of news.

User

Posted 29 Mar 2016 at 17:15

Originally Posted by: Online Community Member

Just had the result- but the receptionist on the phone gave me a scare - she said 'It's below 3.0, so that means it's OK'. ( I explained that was if I had a prostate..)

Finally got to the figure, <0.1.

Hope you don't mind me sharing that bit of news.

User

Posted 29 Mar 2016 at 18:12

Hello mate
Very chuffed for you indeed. A glass of wine tonight for you and Mrs Walnut perhaps.
In my experience , for what it's worth. If the GP requests the test ( ie their name on the form ) then you can phone for the result or drop in. If the Uro or Onco has requested ( i.e. Their name on the form ) , then the local GP will not be able to give you the results. But you can phone the relevant hospital secretary. That's how it operates here anyway.
Over the last 3 years I've had multiple need to contact secretaries and receptionists , and whilst some are amazing I find others to be utter jobsworths well beyond their station. My tactic? Utter flattery. Let them have their moment and feel very important. Appreciate their time and effort verbally. I've found this the best way.
Last time I phoned the woman did just say " no action required " but when I explained the exact figure was of utmost importance she was ok about it. I DID sense an inaudible tut but just offered an extra thank you instead. I'll haunt some of them when I'm done !

User

Posted 29 Mar 2016 at 18:23

What a relief for you but what a shame that you had to go through the scare first.

Just been along to have bloods taken for PSA result on 11th April.

My OH has a way of dealing with the results - "I am so hoping that the reading is the same or lower but failing that I might need a new handbag/coat/ etc to help me cope". The last 3 results have cost me a bit so I am really hoping for a good result this time. Gives us a laugh though.

Very pleased for you and I hope the continence issue will improve - it has taken 7months for me to get back to normal but got there in the end.

All the best

Kevan

User

Posted 29 Mar 2016 at 18:41

I guess things vary region to region but I had my blood test a few days before seeing my surgeon at my six weeks post op appointment.

Thanks Chris

User

Posted 29 Mar 2016 at 18:55

Hi Walnut,

I posted this on another thread yesterday:

You can easily find out what your ... PSA test results are, but you need to be cute and ask the right questions.

The results are normally back at the GP's surgery within a couple of days of the test.

Every time I phone my GP's surgery and ask for the result the receptionist allways tells me my PSA was 'normal'.

I then have to say to her, 'there should be a number, what is the number?' and then she tells me.

Honestly it is like deja vue, Ground Hog day, exactly the same conversation every 3 months.

Dave

User

Posted 29 Mar 2016 at 19:09

I've never heard of anyone getting their first post-op PSA from the GP before - it is routine to see the surgeon somewhere around week 6 - 8 to review recovery, get the pathology report and first PSA.

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

User

Posted 29 Mar 2016 at 19:17

I wish loads of the roller coaster could have been carried out over the phone. Surely it has to be more simple unless a procedure is required. By the time you've battled through traffic only to find a full car park even though you got there 30 mins earlier , then trawled through hundreds of sick people ( including 80 smokers at the main entrance ) then waited over an hour after your appointment time to see the specialist , then been charged £3.20 for the privilege of having your car dented etc , you almost need mental health team input on top. For 10 mins of info that you could listen to without even having to turn Countdown off for !! Rant over
But I AM a fan of the NHS thusfar in my travels

User

Posted 29 Mar 2016 at 19:43

Originally Posted by: Online Community Member

I still get PSA results at the 6 monthly review with my consultant urologist ... my GP appears to have no input... thankfully..

User

Posted 29 Mar 2016 at 19:46

Originally Posted by: Online Community Member

I still get PSA results at the 6 monthly review with my consultant urologist ... my GP appears to have no input... thankfully..

It's the same with me, the oncologist gives me a blood test form for PSA and other tests when I see her. I have the tests a few days before the next appointment when I will get the results

Arthur

User

Posted 29 Mar 2016 at 20:29

Hi Luther - yes it was a bit of a pelvic floor inhibiting moment.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-surprised.gif

Thankfully I was able to dwell in my guess that she was talking about age related norms. Phew!!

User

Posted 29 Mar 2016 at 20:39

Evenin' Chris J

I'm going to blame you for the suggestion of a bit of imbibing tonight if I have a bad head tomorrowhttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif

I'll try and remember your strategy of flattery - but I think I'm nowhere near as smooth an operator as yourself. I tried to think who might be your role model but no joy. Clearly, you're not based on the character 'Swiss Toni' from the TV series ' The Fast Show' or you wouldn't have got such help from secretaries....

User

Posted 29 Mar 2016 at 20:54

Hi Kevan - thanks!

I'm off to see my Consultant for the follow up on the 11th as well. Good luck for your meeting.

Makes me smile- your wifes' shopping ploy. I'm in mine's good books at the mo' because I finished building the bathroom, that I started 8 years earlier, just 2 days before my op. There's a backlog of 'jobs' to tackle once I'm recovered, but the Prostate Cancer has left me less guilty about lazing around, something I never used to do.

What sort of bike is it in your avatar photo, and how far/ for how long can you ride it without prostate related stuff impinging on your enjoyment?

User

Posted 29 Mar 2016 at 21:15

Hi Colwickchris and Lyn

The reason the GP is involved is that I live in Wales and the surgery was done the wrong side of Offa's Dyke! It's a 170-80 mile round trip so the GP handled the PSA test. I'll then take the printed results to the consultant on 11 April.

The GP surgery were proactive in inviting me in for an even earlier PSA than last week, having received conflicting info' from the catheter removal clinic about when the repeat PSA should be taken. I read your account, Lyn, of heightened activity/stress levels and PSA readings, and thinking much the same, and also thinking that by leaving it longer any residual PSA might be eliminated, I deferred the test until last week. I guess that's one of the problems where not every part of the treatment pathway is Consultant led..

It is also rather confusing for a moment when you get the results by phone - when they said 0.1, I asked if that was 0.10, meaning on the high side, being >0.09 if it was the extra decimal place test. As I couldn't explain myself to the receptionist, I then took another tack and asked was there a little arrow anywhere near the 0.1. 'Yes, and it's pointing to the left' .....

User

Posted 29 Mar 2016 at 21:16

Hi Walnut

It's just a Royal Enfield 350 Bullet. It's a machine for tinkering with as well as riding and so I get pleasure from it whatever the weather. It does not have an electric starter and so it has helped with my "rehab" by needing me to kick start it as well has pulling it up onto the stand. I am at a stage now where riding it does not cause me any problem at all.

I am pleased to see that you are relaxing a bit as I was a bit worried that you were maybe overdoing things a bit to begin with. I am sure you will be back to doing everything you enjoy soon enough.

I hope that your impending results are good and thst they continue that way.

Glad you have been catching up with chores as like you I have just finished most of the kitchen renovation but I like to leave one bit unfinished so that my dear wife doesn't add a new job to the list.

All the best

Kevan

User

Posted 29 Mar 2016 at 21:29

Evening Dave K

I think I read that bit you posted earlier, and can only empathise. I've never been a regular enough attender at my GP surgery to develop the sort of relationship where they're able to overcome the reticence associated with the Data Protection Act etc, and just tell me what I need to know. Maybe Chris J will do a masterclass on Schmoozing techniques..

Its really frustrating, coming up against the bureaucracy, particularly where there's anxious waiting involved but to balance that, when you read some of the American Prostate Cancer forums, and there are people on there asking what they should do because they have symptoms but haven't got health insurance it is seriously scary.

User

Posted 29 Mar 2016 at 22:46

Originally Posted by: Online Community Member

I read your account, Lyn, of heightened activity/stress levels and PSA readings, and thinking much the same, and also thinking that by leaving it longer any residual PSA might be eliminated, I deferred the test until last week.

Ah that makes more sense then although even then, it would probably have been better for your heart if the GP practice had just sent the pSA result to the surgeon to give to you on the 11th. If your result had been poor, they would not have been in a position to help you or give you any support :-(

You mention my theory around stress impacting on PSA. Sadly, having read a whole load of different papers, I can categorically say that every research project worth its salt has concluded that stress does not affect PSA in any way. I now have new theories.

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

User

Posted 30 Mar 2016 at 00:12

Hi Walnut,

When I phone for PSA results, I gather that the GP has already seen them and marked them up as 'normal', I think it only takes a couple of working days for the surgery to get the results, but I am seldom in much of a hurry and usually don't phone for a result untill about a week later, which allows time for the test results to get to and from the GP within the surgery's internal mail system.

So I suspect that every time the receptionist gives me the result, the GP has already marked my results up as for release. So far as data protection is concerned the receptionist always asks me to provide address and date of birth.

Of course I am talking here about PSA tests where the blood is taken at my doctor's surgery, I have had a few done at the hospital, in which case I have had to phone the hospital nurses for the result, but I have never had a problem, they have always told me.

In my working life I spent a lot of time phoning people up and asking for information, I never thought of myself as particularlly skilled, but I always worked on the basis that I expected them to tell me what I wanted, I never asked them 'if' they could tell me, I just asked them to tell me. Someone famous once said that it is easier to obtain forgiveness than permission, and I think the same logic works with the NHS?

Dave

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