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GP won't do blood test

User
Posted 05 Oct 2015 at 18:27
Well I made my mind up to ask the GP gor an 'interim' PSA test. It's been 7 months since my last one.

For those who don't know...I had a RP followed by adjuvent RT in 2013. Before RT my PSA had rose to 0.087. Steadily over the next 18 months it dropped to 0.028 at my last test in March. Oncol said to have my next test in a year ie March 16.

I've thought about that and thought I'd ask the GP for a test mainly as I've had a bit of an ache in my back which I'm sure is more muscular as I don't feel it when sat or in bed etc. But it's on my mind so let's rule out the PCa (fingers crossed).

Phoned surgery last week to request a blood test form. Went to.pick it up today to be told they won't test me till next March. Wouldn't mind but they put me on annual testing too early according to NICE guidelines.

To top it all the nurse was stood at reception and she said "you dont need a PSA test, you haven't got a prostate". I explained that they do the PSA test to monitor it and if it increases it will probably be due to cancer remaining. She stood there and told me

I was wrong and if I didn't have a Prostate I didn't need a PSA test.

Needless to say I had to walk out before I said something I may have regretted

Bri

User
Posted 05 Oct 2015 at 19:03

I think they have the measure of you Bri and have come up with a multi-disciplinary plan to manage your anxieties :-(

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

User
Posted 05 Oct 2015 at 20:29

That is strange Bri as the oncologist told me that when I get passed back to the GP I must have a PSA test ever six months and not to let them fob me off . Andy

User
Posted 05 Oct 2015 at 21:23
Bri

When I get home I'd like to spit in her eye for you ignorant as well as very indiscrete.

Maybe if you are really concerned you could ring your consultant's Secretary and explain how anxious you are.

Your backache is almost certainly nothing to do with PCa but it is if it is making you anxious!

I would definitely make sure you make a passive complaint about the nurse and her loud mouth.

Xx

Mo

User
Posted 05 Oct 2015 at 22:39

Thanks for the replies....will think about what to do.

Lyn I've read your reply a couple of times and don't really know what to make of it. To be honest I get pretty pxxxed off with this anxiety label people seem to tag on me.
Dx with high risk cancer...an op that failed but left me with life changing side effects, Radiotherapy....and, as you amongst others point out, the odds are stacked against me due to having to have follow up treatment. Then put on a 6 monthly, then yearly testing regime when a lot of men would demand 3 or 4 monthly tests particularly this early in the journey. Carry on working, getting on with my life and no mention of PCA to family, friends or work colleagues. But then I post about having a 7 month test and I am being anxious

.

I shall not bother in future

Bri

Edited by member 05 Oct 2015 at 22:46  | Reason: Not specified

User
Posted 07 Oct 2015 at 05:50
Cheers Dave it's actually the GP who refused although I didn't see him as didn't want to waste an appt time. He will be referring to the oncol letter about annual testing.

I've had the blood test now by using the blood form the oncol gave me for next March. I don't think she will be very happy about this but it's my life

I will ring her secretary today to see what she thinks about it

Bri

User
Posted 07 Oct 2015 at 14:09

Bri

Good line of action just what I would have done in your situation.

I know you hate the anxiety label, but if the back ache caused you to think PSA test then maybe we should agree to call it concern?

In all honesty I don't sometimes understand why it bothers you so much, as CB has said we are all here to be supportive and we do that because we like you and care for you as friends should.

See you soon

Xx

Mo

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User
Posted 05 Oct 2015 at 19:03

I think they have the measure of you Bri and have come up with a multi-disciplinary plan to manage your anxieties :-(

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

User
Posted 05 Oct 2015 at 20:29

That is strange Bri as the oncologist told me that when I get passed back to the GP I must have a PSA test ever six months and not to let them fob me off . Andy

User
Posted 05 Oct 2015 at 21:23
Bri

When I get home I'd like to spit in her eye for you ignorant as well as very indiscrete.

Maybe if you are really concerned you could ring your consultant's Secretary and explain how anxious you are.

Your backache is almost certainly nothing to do with PCa but it is if it is making you anxious!

I would definitely make sure you make a passive complaint about the nurse and her loud mouth.

Xx

Mo

User
Posted 05 Oct 2015 at 22:39

Thanks for the replies....will think about what to do.

Lyn I've read your reply a couple of times and don't really know what to make of it. To be honest I get pretty pxxxed off with this anxiety label people seem to tag on me.
Dx with high risk cancer...an op that failed but left me with life changing side effects, Radiotherapy....and, as you amongst others point out, the odds are stacked against me due to having to have follow up treatment. Then put on a 6 monthly, then yearly testing regime when a lot of men would demand 3 or 4 monthly tests particularly this early in the journey. Carry on working, getting on with my life and no mention of PCA to family, friends or work colleagues. But then I post about having a 7 month test and I am being anxious

.

I shall not bother in future

Bri

Edited by member 05 Oct 2015 at 22:46  | Reason: Not specified

User
Posted 05 Oct 2015 at 23:43

Bri, you have misunderstood me. I was the first to respond (as I often am when you post) and was simply trying to give you a smile.

 

The nurse is clearly an idiot and was saying whatever came in to her head - it doesn't make any sense to tell you that they won't do another test until the 12 months is up and then in the next breath to say PSA tests aren't done on men with no prostate - she obviously knows that isn't true otherwise she wouldn't be telling you to wait another 5 months.

Your onco decided you should not have a test for 12 months. She has apparently communicated that to your surgery and they are complying. Personally, I wouldn't have left the surgery - I'd have made a fool of the nurse.

You could always contact the onco to say you have backache and can the test be brought forward but I suspect she will say no.

Edited by member 06 Oct 2015 at 00:56  | Reason: Not specified

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

User
Posted 05 Oct 2015 at 23:48

Hello Brian,

Not sure what you ,mean by you will not bother in future? You will.

So, to deal with your nurse, if it were me and I had been in that situation I would have asked whether practice was not complying with the NICE guidelines and the likelihood that I would need further treatment and that more frequent checks are recommended?

However, moving on I would now write a letter to the Head of the practice outlining pretty much what you have said above in support of you having another PSA test asap. You have put a good case "online", repeat that on paper.

So, to deal with "this anxiety label people seem to tag on me". If you present as anxious, look anxious and talk anxious, people will assume/believe/accept that you are anxious, no?

How many times have you posted here about your anxiety some time prior to your next scheduled PSA test? And how many times have you suggested that you do et anxious? FFS we all do, it's natural! And what have you got? Support. Acceptance and acknowledgement of your anxiety, but overwhelmingly support. That is what you are getting now, even from Lynne although she is seriously p****d off at the moment. Her Lovehoney parcel with a triple snout roly poly rubby dubby vibratey shaky ding dong shlong separating ball aching chimney sweeping sperm whale massager did not arrive in time?

Cut her some slack mate.

End message Bri, we are all here for you, so do continue to bother, please. :-)

atb

dave

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User
Posted 05 Oct 2015 at 23:49

Ah I see Lynne's parcel has arrived, a much better clearer post!

;-)

dave

Edited by member 05 Oct 2015 at 23:55  | Reason: Not specified

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User
Posted 06 Oct 2015 at 00:34
Hi Bri

You are quite right to be concerned at the apparent lack of knowledge by your practice and would highlight this failing to head of the practice. They cannot refuse you if you demand a PSA test. To give another example of this, my brother has been advised by me to have regular checks and as he is 66yrs old I suggested it may be wise to have these annually but even though the GP is aware of the family connection he is reluctant to allow this, so in 2012 his PSA was 0.049, in 2013 it was 0.048 and this year it has risen to 0.37 which in % terms is quite high but we aren't pressing the panic button yet but I am aware even though the figures for a man of his age are excellent I am aware of the trend and the doubling time so will keep an eye on him, but the GP has told him he won't now give him another test unless he has symptoms which we all know may be to late. So do what feels right for you demand your rights and don't take no for an answer.

All the best

Roy

User
Posted 06 Oct 2015 at 00:57

Originally Posted by: Online Community Member

Ah I see Lynne's parcel has arrived, a much better clearer post!

;-)

dave

 

Yes but we had no batteries in the house :-( 

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

User
Posted 06 Oct 2015 at 08:36

Bri,

I would look at this from two angles.

The first is your oncologist, in their infinite wisdom and experience, believes you to be at a stage where your PSA only needs to be checked yearly.

The second is to have a PSA test on a more regular basis for peace of mind (something which I would want to do myself for at least 5 years). I would certainly try your GP again. I would also look to have it done privately. A quick search of the internet has come back with Medilabs who offer a super sensitive PSA test for £149, results back in 8 days. I'm sure there are plenty others.

Flexi

ps. I have no link with the above company so as usual, DYOR. I just reference it as an example.

User
Posted 06 Oct 2015 at 09:25

Bitter experience taught me to take as much initiative into my own hands when Neil was ill ! Trouble is, if you have PCa you can't afford to be fobbed off or not listened too, the stakes can simply be too high. Go with your gut instinct, Bri, if you need to chase this up, I just hear this sort of thing too often on the FB PCa forums including a worrying ignorance about the disease.

 

Fiona. x

User
Posted 06 Oct 2015 at 10:12
Originally Posted by: Online Community Member
Bri,

. I would also look to have it done privately. A quick search of the internet has come back with Medilabs who offer a super sensitive PSA test for £149, results back in 8 days.

The problem then would be that another lab will have slightly different machines with slightly different calibration which might create a false rise or conceal a real rise :-(

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

User
Posted 06 Oct 2015 at 10:57

Go and see your GP and quietly insist on a test. Explain your anxiety, sorry your syntomology and I am sure they will oblige. I would be interested if it eases your fears at all or just creates further issues! It seems to me you are seen as a good bet, hence the 12 month testing regime by the onco but maybe they misjudge your need for confirmation of that so just go and get it sorted.

We all love you, including Lyn, so don't think about leaving the site we need your sanity. Did u read Lyn's post after Twickenham by any chance!

User
Posted 06 Oct 2015 at 11:17

Originally Posted by: Online Community Member
Originally Posted by: Online Community Member
Bri,

. I would also look to have it done privately. A quick search of the internet has come back with Medilabs who offer a super sensitive PSA test for £149, results back in 8 days.



The problem then would be that another lab will have slightly different machines with slightly different calibration which might create a false rise or conceal a real rise :-(

So if, IF you have to pay for it pay for it at your GP surgery.  I am surprised that they will bot , that Nurse would not, allow a test?  My new surgery allow me test 3 monthly to get their own record of my new normal, and I am 2 years 5 months post op.  

One issue with the 3 monthly testing is that the SBT or anxiety potential comes round 3 monthly.  Would I, you, be better worrying annually?

Maybe a letter accompanying you and making the request might be harder it refuse?

atb 

dave

 

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User
Posted 06 Oct 2015 at 22:53

Bri

I had to post for you even though I am snowed under with puppy poop ohh the realities of dog breeding . Honestly in your situation I can one hundred percent understand where you are coming from psa test anxiety or squeaky bum time and the length of time between tests is stressful no matter where we all are on our journey. Bloody receptionists and GP nurses  who think they rule should be http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-sealed.gif

If you feel that you would like or need a test then fight for it don't be fobbed off. It is your life and your pca go for it that's what I say. Get back in there and make  a scene . Oh and can you video it and put it on FB.  I will repost any dayhttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-sealed.gif

With you all the way and if you would like me to come with you just give me a shout .http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-sealed.gif

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 06 Oct 2015 at 23:09
This is the problem for me...I don't need the GP to ease my fears. I am not worrying...I don't have anxiety.

I posted some time ago about whether I would decide to request a 6 month test rather than the recommended year. I left it as I didn't feel an urgency to have it done...not the actions of someone at their wits end with worry really.

I've discussed with my wife and she feels I should have one because if it's fine...crack on...if it's not get some early intervention..the niggle in my back was the deciding factor..nothing more nothing less.

My post was to point out the issue I faced when requesting the test.

So I phoned the urologists secretary and explained the situation. She agreed to send me a blood test form 1st class but the oncol would have to sign it. She would ring me if there was a problem.

So I nipped to DRI with the blood test form she had given me for next March. When I got home the oncol secretary had phoned so I guess the oncol wasn't going to agree...too late..They best sue me.

The test will be at a different lab ie Donny instead of Sheffield and I believe it's a standard test not sensitive.so I followed part of her recommendation. After reading Sweeps post about the stress the sensitive test causes I think I've done the right thing. So whilst there may be some variation due to calibration etc I would expect this to be minute..but if they only measure down to 0.1 I am expecting the <0.1

Hopefully my back problem is just a back problem or muscular issue...and that's not anxiety..its a just a reasonable thought process.

Bri

Edited by member 07 Oct 2015 at 05:55  | Reason: Not specified

User
Posted 06 Oct 2015 at 23:23

Good to heart Brian,

and also good to hear that I have sent Lyn some batteries.

atb

dave

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User
Posted 06 Oct 2015 at 23:24

Good to heart Brian,

and also good to hear that I have sent Lyn some batteries.

atb

dave

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User
Posted 07 Oct 2015 at 00:26

Hi Brian,

I might be tempted to play them at their own game.

The nurse will not allow you to have a blood test, fair enough.

Next step make an appointment with your GP. 

Tell your GP you are experiencing pain in the lower back. 

Your GP will know from your medical history of prostate cancer that secondary spread is one of many possible causes of back pain and will need to order a PSA test to determine whether that possibility merits further investigation.

Hey presto, you have your PSA test.

:)

Dave  

User
Posted 07 Oct 2015 at 05:50
Cheers Dave it's actually the GP who refused although I didn't see him as didn't want to waste an appt time. He will be referring to the oncol letter about annual testing.

I've had the blood test now by using the blood form the oncol gave me for next March. I don't think she will be very happy about this but it's my life

I will ring her secretary today to see what she thinks about it

Bri

User
Posted 07 Oct 2015 at 10:23
Ring the oncologist secretary and say you have lost the form and can she send you a replacement. Job done.

Roy

User
Posted 07 Oct 2015 at 14:09

Bri

Good line of action just what I would have done in your situation.

I know you hate the anxiety label, but if the back ache caused you to think PSA test then maybe we should agree to call it concern?

In all honesty I don't sometimes understand why it bothers you so much, as CB has said we are all here to be supportive and we do that because we like you and care for you as friends should.

See you soon

Xx

Mo

 
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