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Man aged 50+, asks GP for PSA test - sent away with “information” leaflet!

User
Posted 02 Apr 2019 at 02:38

My mate Mick in Bradford who is 53, visited his GP for a routine appointment and while he was there, at my behest, requested a blood test form for his first ever PSA test.

He was given an information leaflet instead, and told to come back in a week if he still wanted the test. If I had been given a leaflet eighteen months ago I could have read it and thought ”I’ve got no symptoms, why bother with a PSA test anyway?” and might now be dying of cancer instead of being cancer-free!

Cheers, John.

User
Posted 02 Apr 2019 at 15:12
The point is that if Mick has a base-line PSA test now, any future increases in his PSA level in two or three years’s time would be cause for further investigations.

I had one in 2010 (2.2 ‘normal’) and the next one was not until 2017 (16.7 - not normal at all).

I read that the PSA blood test costs only eight quid.

Cheers, John.

User
Posted 02 Apr 2019 at 14:01

Of course, an interesting question is how many of us here have been treated following a PSA test, but would not have died or suffered any serious symptoms from PCa had it continued to go unnoticed.

That is the often quoted argument for not doing routine testing.

User
Posted 02 Apr 2019 at 14:13
Had the same reaction year on year when I attended GP Well Man clinics. They were taking a blood test for loads of other things but wouldn’t include a PSA check despite me asking every time. It was only when I was admitted to hospital with a suspected mini stroke (which wasn’t) that I was diagnosed after bloods, MRI and CT scans with PCa with a PSA of 5806. Pretty annoyed with my GP as a result but he had just retired and now my new GP is 100% better. However, could have been caught so much earlier. Treatment at the hospital since diagnosed has been brilliant even though my Urologist worried me by saying no point in having biopsy because we know what it is, where it is and how bad it is, just crack on with early treatment and handed me over to a wonderful Oncologist. Just over six months later with Chemo and hormone treatment, PSA down from nearly 6000 to just 6.6 but still have this rankle about how different it could have been if caught earlier. Maybe ‘curable’ rather than ‘non-curable’

Keep telling friends to get tested, one of them even had a PSA test through internet because his GP wouldn’t sanction a test on NHS.

David

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User
Posted 02 Apr 2019 at 11:33

Agree whole heartedly with you on this one. I think its disgusting the UK don't test earlier and send out letters to men at least when they reach 40, maybe 45.

I was 62 when i got a water infection when i was away and a lovely doctor told me i needed to get tested when i got home, although i had no symptoms at all and still don't. I went to my own doctor and had a PSA  of 26. Was sent to a 'one stop clinic'. What a waste of time. I had all the tests except MRI and the consultant said all was OK but to have another PSA test when the water infection was gone - maybe a couple of months. I went back in a few months and the PSA was the same and then the machine starts to roll, very quickly in my case (G9).

For a disease which is pretty prevalent it is treated very offhand at the doctor/diagnosis stage. I think the treatment once diagnosed is very good but its getting diagnosed which is the key.

It doesn't help when the information being handed out says to look out for the symptoms. Well there are enough of us on here that had no symptoms to show that it's important to be tested whatever.

Rant over....

Phil

User
Posted 02 Apr 2019 at 12:55

At age 56, I was having a routine blood test by the nurse, and asked if they could add a PSA test. She said no - that required a request from the doctor, which would be a 3-4 week wait for an appointment, so I didn't pursue it.

A few months later, a local charity was offering free tests, so I did that, and it came back 45.

I could so easily have not had a test at all.

User
Posted 02 Apr 2019 at 14:01

Of course, an interesting question is how many of us here have been treated following a PSA test, but would not have died or suffered any serious symptoms from PCa had it continued to go unnoticed.

That is the often quoted argument for not doing routine testing.

User
Posted 02 Apr 2019 at 14:13
Had the same reaction year on year when I attended GP Well Man clinics. They were taking a blood test for loads of other things but wouldn’t include a PSA check despite me asking every time. It was only when I was admitted to hospital with a suspected mini stroke (which wasn’t) that I was diagnosed after bloods, MRI and CT scans with PCa with a PSA of 5806. Pretty annoyed with my GP as a result but he had just retired and now my new GP is 100% better. However, could have been caught so much earlier. Treatment at the hospital since diagnosed has been brilliant even though my Urologist worried me by saying no point in having biopsy because we know what it is, where it is and how bad it is, just crack on with early treatment and handed me over to a wonderful Oncologist. Just over six months later with Chemo and hormone treatment, PSA down from nearly 6000 to just 6.6 but still have this rankle about how different it could have been if caught earlier. Maybe ‘curable’ rather than ‘non-curable’

Keep telling friends to get tested, one of them even had a PSA test through internet because his GP wouldn’t sanction a test on NHS.

David

User
Posted 02 Apr 2019 at 15:12
The point is that if Mick has a base-line PSA test now, any future increases in his PSA level in two or three years’s time would be cause for further investigations.

I had one in 2010 (2.2 ‘normal’) and the next one was not until 2017 (16.7 - not normal at all).

I read that the PSA blood test costs only eight quid.

Cheers, John.

User
Posted 02 Apr 2019 at 15:29

Originally Posted by: Online Community Member

Of course, an interesting question is how many of us here have been treated following a PSA test, but would not have died or suffered any serious symptoms from PCa had it continued to go unnoticed.

That is the often quoted argument for not doing routine testing.

That view is often put out.  Who would like to volunteer to take that chance I wonder and eschew any treatment?

The PSA test can also give a false impression of a mans PCa health, my 67 year old friend with a reading of 2.0 for example.  Diagnosed after an MRI for another matter showed the problem.

We got to make do with what tests we have/there are and hope for the best.  

dave

Do all you can to help yourself, then make the best of your time. :-)
User
Posted 03 Apr 2019 at 09:34

Yep, agree with all the comments so far. 

It is also agreed , i think by all , that we need a better diagnosis tool than the PSA Test.

I am fundraising for PCa UK with a quiz night and a 5k Tough Mudder. Hoping that i can help in some small way to find a better tool than PSA for initial diagnosis. But as that's all we have at the moment we ( the ones that were found ! ) have to try to get more people aware that PCa can be symptomless even at quite advanced stages. I was G9 and locally advanced so feel very lucky mine was found when i was. Would have been nice to have been a bit earlier but glad it wasn't later......

Phil

User
Posted 03 Apr 2019 at 21:31

As frustrating as it might appear, it seems this GP is on the ball with the NICE guidance and has done exactly as he is required to - a patient asking about a PSA test should be provided with counselling or information on the pros and cons of the PSA test and given an opportunity to absorb that information and decide whether or not they wish to go ahead. It is exactly the same process for women who may need a mammogram or smear test.

Prostate cancer care pathway guidance for GPs is here https://www.gov.uk/government/publications/prostate-specific-antigen-testing-explanation-and-implementation 

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

User
Posted 03 Apr 2019 at 22:42
Totally agree Lynn. (Was going to quote but not working..so issues aren’t fixed)

I think the GP in this instance has given time and information for his patient to consider the pros and cons and to make an informed decision. We don’t have a screening programme so at least this GP is doing as expected it the current climate

Bri

User
Posted 03 Apr 2019 at 22:43
Totally agree Lynn. (Was going to quote but not working..so issues aren’t fixed)

I think the GP in this instance has given time and information for his patient to consider the pros and cons and to make an informed decision. We don’t have a screening programme so at least this GP is doing as expected in the current climate

Bri

User
Posted 04 Apr 2019 at 14:55
Thank you for the link Matron.

I note the original paper is ten years old and the ‘advice’ to GP’s is three years old. I just find it galling that women are offered regular cancer screenings (including Her Loveliness, who has been invited twice for cervical smear tests - or whatever we are supposed to call them these days - despite her cervix and the rest of her reproductive organs having been consigned to medical waste following her total hysterectomy three years ago!). The GP and hospital have been made aware of her situation, but the appointments keep coming......

If you have a PSA test aged 53 and it is ‘normal’, and then three years later it is substantially raised, then you probably have a problem somewhere.

If you are dissuaded from having the test in the first place, you could end up like me; T3aN1M0 or worse, before you know it. I am biased, of course, but at least I’m still breathing to be able to voice my dissent.

Cheers, John.

User
Posted 04 Apr 2019 at 15:15

I had my well man clinic at age 40 and 45.  My cancer was diagnosed at 46 -pT3bN0M0, Gleason 9.  What if I had had a PSA test at 45?  Would I have been in such a bad way?  I know the NHS just can't test every 45 year old man, but my cancer had probably been growing for a number of years.

A 50 year colleague who has had previous prostate problems was told at his 50 year check-up that the nurse couldn't authorise a PSA test - he has to see the GP despite having had previous issues.

Ulsterman

User
Posted 04 Apr 2019 at 20:11

Originally Posted by: Online Community Member

My mate Mick in Bradford who is 53, visited his GP for a routine appointment and while he was there, at my behest, requested a blood test form for his first ever PSA test.

He was given an information leaflet (was that counselling?) instead, and told to come back in a week if he still wanted (offs if you must, if you really really must? ) the test. (timewaster)  If I had been given a leaflet eighteen months ago I could have read it and thought ”I’ve got no symptoms, why bother with a PSA test anyway?” and might now be dying of cancer instead of being cancer-free!

Cheers, John.

Rules are for the obedience of fools and the guidance of wiser men. Maybe find a GP that is wiser?  I do wonder if the person determining the treatment or test or lack of it, if it was them, would they behave differently?

If it were me, I would go for it, whatever IT is?

atb

dave

Do all you can to help yourself, then make the best of your time. :-)
User
Posted 04 Apr 2019 at 20:34

Originally Posted by: Online Community Member


I note the original paper is ten years old and the ‘advice’ to GP’s is three years old. I just find it galling that women are offered regular cancer screenings

 

The point is that it is still national guidance and GPs are supposed to comply; no agency is currently campaigning for the PCR pathway to be amended or updated, including PCUK as far as I am aware. 

 

Cervical smear tests are rather a lot more reliable than PSA tests, and mammograms result in the same % of false positives, false negatives and over-treatment as PSA tests. It will only get worse when the big American companies get their hands on our health services. 

 

What I find most remarkable about the PCR pathway guidance is the statement "GPs should not proactively raise the issue of PSA testing with asymptomatic men." Hard to ignore such a bold statement; we can all get angry with GPs but they have restrictions just as many of us do in our own field of work. 

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

User
Posted 04 Apr 2019 at 22:26

Originally Posted by: Online Community Member

What I find most remarkable about the PCR pathway guidance is the statement "GPs should not proactively raise the issue of PSA testing with asymptomatic men." Hard to ignore such a bold statement; we can all get angry with GPs but they have restrictions just as many of us do in our own field of work. 

Thank goodness my GP didn’t follow that advice. Had he not offered me a PSA test last year when I was completely symptomless, not only would my prostate cancer not have been found, but, much more seriously, my localised kidney cancer wouldn’t have been found either, which my surgeon told me was caught just in time.

Chris

 

User
Posted 22 Sep 2019 at 15:40

Hi. Though the PSA test is there... it is not 100% reliable in any case. When I was 1st tested it was 6.5. second test was 4.7 and the third was 3.4! The Gp asked if I had cum in last 48hrs of first test as climaxing can send off a high result. lucky for me he still put the wheels in motion for biopsy resulting in a G8. It is scary that it appears down to the Gp if you get tested in the 1st place and sent for follow up in the 2nd!

User
Posted 24 Sep 2019 at 14:53
... and now the NHS are to withdraw the bowel screening programme
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

 
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