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PSA beware of false negatives

User
Posted 15 Feb 2020 at 09:45

My father had Prostate Cancer when he was in his 70s, which put me at relatively high risk.
So I started having PSA tests three years ago..
My levels came back us 1.7 ug/L - I was reassured, a good reading as the cutoff then was 4ug/L.
But it turned out to be a false negative.

A year later I had another test. When I called the GP a week later, I was told the results were 'fine'.  I was not given a figure. But I felt reassured. In reality the PSA had risen by 20% in under a year, and that should have triggered further investigation. But two good results in a row gave me a false sense of confidence. I did not even bother to get a PSA test the following year.

In November I visited the GP because of a knee problem, and asked, while I was there, for a PSA test. The result was 4.1 - marginally above the old threshold. But the PSA had doubled in 2 years. MRI and then Biopsy showed an aggressive tumour Gleason 4+5, and I did a RARP on 27/1/2020. As I reported in another thread surgery was far easier than I could have imagined.

My full PSA results are:
18/10/2016 1.7 ug/L
23/8/2017 2.1 ug/L
11/11/2019 4.1 ug/L

In retrospect my prognosis would have been far better if I had been diagnosed one or two years ago. I did have a symptom - dribbling after urination. But it never occurred to me that this was connected this with prostate cancer. In fact my early PSA tests gave me a false sense of security.

So my conclusions are:
1) PSA tests results can be misleading. It is dangerous to assume that a single low PSA reading means you are in the clear.
2) Always insist on getting the actual figures, and keep a record
3) Gradient is far more important than absolute level. Any significant increase should be investigated.
4) Be aware of symptoms. Any change in urination or ejaculation is reason for further investigation

No point in dwelling over what I should have done. But I hope my observations help others.



Edited by member 16 Feb 2020 at 12:28  | Reason: Not specified

User
Posted 15 Feb 2020 at 21:35

Amnon,


Sorry you were caught somewhat later than you might have been.


The trouble is that prostate/PSA knowledge in primary care is almost non-existant, and any there is tends to be way out of date. (5 years is way out of date in this field.) I've been at prostate  conferences where GP's have stood up and said this just isn't covered in their training. All of urology gets very little training time, yet it accounts for 1/3rd of all hospital surgical admissions.


I have also flagged up someone here who thought they were in the clear with PSA below threshold, but who had fortunately given enough info that I could see doubling time was way too short.

Edited by member 15 Feb 2020 at 21:37  | Reason: Not specified

User
Posted 15 Feb 2020 at 21:43

Good post.   I can imagine your GP's surgery saying it's fine on the phone.  I've twice been told my GP says my psa is good.   When I asked why they said it was because the GP has written under 4 is OK.    Actually my prostate has been removed and if it was 4 it would be a tremendous shock.


In their defence I'm being treated and monitored at another hospital that isn't connected to their system.


The people who answer the phone at a GP are just reading a standard text and know little about it.  It needs a GP who is aware.


That your Gleason is 4+5 is quite unusual with such a low psa but it does happen. 


A good warning worth making.  It should be pinned up.

User
Posted 16 Feb 2020 at 08:49
What do you consider to have been a false positive, Amnon? Your story sounds to have been rather the opposite!

Best wishes,

Chris
User
Posted 16 Feb 2020 at 12:21

Originally Posted by: Online Community Member
What do you consider to have been a false positive, Amnon? Your story sounds to have been rather the opposite!

Best wishes,

Chris


Putting everything together it appears that I have  had cancer for at least three years.
But the low PSA readings gave me a false sense of confidence.
If I had had my treatment earlier, I might have had a lower Gleason score and a lower chance of recurrence.

User
Posted 16 Feb 2020 at 12:25

Understood, Amnon, but that's a false negative, not a false positive. A false positive is when a test says there's something wrong with you, but there actually isn't.


Perhaps worth noting that the Gleason grade of cancer generally doesn't change over time. An earlier diagnosis would have caught the tumour when it was smaller, but your Gleason score wouldn't be any different.


Hope your recovery goes smoothly.


Best wishes,


Chris

Edited by member 16 Feb 2020 at 12:28  | Reason: Not specified

User
Posted 16 Feb 2020 at 12:28

Originally Posted by: Online Community Member
Understood, Amnon, but that's a false negative, not a false positive. A false positive is when a test says there's something wrong with you, but there actually isn't.

Hope your recovery goes smoothly.

Best wishes,

Chris


You are right.
That was a typo.

I'll correct my post.

My recovery is going great, thanks. 3 weeks post op, I am pad free and back to normal...

Edited by member 16 Feb 2020 at 12:30  | Reason: Not specified

 
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