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GP ignored a high PSA reading

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User

Posted 03 Nov 2018 at 23:50

I'm posting this in the hope that it can help prevent similar things happening elsewhere. If you have had or know of similar experiences, I'd be interested to hear.

In 2011, without telling me, a GP in my practice ordered a PSA test after I complained of frequent nightly urination. The PSA reading was 5.68, my GP (not the one who ordered the test but the head of the practice) viewed it and wrote down "Probably not clinically significant". (He also mistakenly wrote down "Free PSA" rather than "PSA" -- the lab result said nothing about free PSA.) I was not informed.

In 2017 I mentioned frequent nighttime urination to my GP again, and another PSA test was done. This time I was informed the test would be done and got a Sunday night call to discuss the result the next day, with the same GP who ignored the 2011 result. He did tell me this time about the earlier result. My PSA was 32, I was immediately referred to the hospital, they found prostate cancer, and I had a nerve sparing prostatectomy (post-op Gleason 4+3, T3A). The three post-op PSA tests were all equal to .01, so all good for now. Just in time it seems (unfortunately, not everybody is so lucky, see here).

I complained to the practice and was informed that the practice had been put into administration by the CQC around the time of my diagnosis. After a reorganization, the practice now has a "Good" CQC rating. I am convinced that a similar mistake cannot happen again at the practice. They went through all previous PSA tests and followed up when necessary (there were a number of instances). However, I would still like to have an explanation from the GP who looked at my 2011 result, but he is still on leave apparently and unable to respond.

A PSA of 5.68 with a family history of PCa (my father survived it) gives about a 30% chance of PCa, and 10% of aggressive PCA. So I find it hard to understand why this reading was ignored. GP guidelines state immediate referral to hospital. I am guessing that due to the controversy surrounding PSA screening some GPs erroneously ignore significant readings.

User

Posted 04 Nov 2018 at 09:16

Good morning wicher.

Thank you for the warning. We have had a few like yourself over the years, where the GP has either ignored or decided in his infinite wisdom, that there wasn't anything to worry about.

I know that what you have had to go through following a misdiagnosis is not something that can just be forgotten about because you are living with the consequences.

I hope that you can get on with your life, your lucky stars might have been a bit more forthcoming and acted bit earlier than leaving it 6 years, but something was watching over you.

Who knows, a couple more years down the line and you might be in the incurable camp.

You'll be unlikely to get any joy from the offending GP so get on with the rest of your life, spreading the word and warning to other men.

Every little helps in that respect

Best Wishes

Sandra

We can't control the winds - but we can adjust our sails

User

Posted 04 Nov 2018 at 09:56

Hi Wicher

I have a similar story and have copied part of my profile below with details for those who can't view it.
I had a raised and increasing PSA for over eight years before a biopsy was done. I too spread the word.
We can not rely on GPs to have in-depth knowledge of all conditions as they are just ''general'' practitioners but we should be able to rely on them to know when a referral to an expert is necessary. Unfortunately we can't. One GP actually said to me that ''PCa is nothing to worry about my father has had it for years and he is fine'' He was showing me to the door as he said it, more interested in his time schedule then anything else. I was so flabbergasted I didn't even reply. That was a good few years ago, if I knew then what I know now I would have put him straight in no uncertain terms.

''Age now 54 (October 17) PSA rising from 3.15 in 2008 (age 45) to 6+ in 2016. DRE normal.
PSA only found to be high due to general blood check.
Checked every 6 months and rising slowly.
08\02\08 - 3.69 after routine check.
26\01\09 over 4.Referred to Uro Cosultant. DRE Normal, no symptoms, Uro said very inlikely that you have PCa, monitor PSA every 6 months.
29\05\10 - 4.62 Referred again. Uro said very unlikely to be PCa.
06\09\10 - 4.88 Different GP now.
13\09\16 - 6.3 After a steady rise over nearly 9 years, referred to new Uro and sent for MRI & Biopsy.

Until this stage I had not researched PCa, having now done so I realise firstly that the first Urologist that I saw should have advised a Biopsy and secondly that the GP over the following years should have re referred me far sooner. If I had an earlier diagnosis it is very likely that I would have had a lower grade PCa and the option of Brachytherapy or more nerve sparing surgary. My confidence in GPs is now very low.

MRI Scan & Biopsy November 2016. Gleeson 3+4=7. Robotic RP Jan 2017 at Addinbrookes by Mr S. LH nerve sparing only. NX. Path Result - Gleeson same. Extracapsular Extension (focal) Grade Pc3a. Locally advanced and moderately aggressive. Microscopic negative margins. Follow up PSA <0.01 (undetectable) so far July 17. Catherter removed after one week. Toatally continent at night from then with slight leakage daytime for about 6 weeks.
I really can't speak highly enough of the care and support from Mr S and all at Addinbrookes.''

Good luck with your continuing low\undetectable PSA

Cheers
Bill

User

Posted 04 Nov 2018 at 12:14

Wicher,

2011 is around the time I went for my 60th health check (2012) and the health assistant did all the tests and paperwork. I told her my family history of this disease (5 immediate relatives at that time - another 3 since) and would I get a test. No. Routine screening was not done. But you could still do one? No.

Fast forward a couple of years and I see the GP with a recurring back injury. Told her my family history as, apparently, it had not been taken(?). No we don't do a test routinely. But you could do one now though? No, its (PSA test) not reliable on its own.

July 2015, difficulty peeing so off to see another GP in the same practice. No sign of family history in the notes (?) so I tell her all again. Immediate PSA test and DRE. Sitting with the doctor on a consultation prior to a biopsy he asks me if there is any history of PCa in the family. You what? Should be in the notes? No, there's nothing here(?). He puts it in while I dictate. I'm livid now. I'm even more bloody livid when I get the T3b result. He agrees, a test even a year ago would have been beneficial. However, the consultant (same hospital) says it wouldn't have made any difference as PCa is slow growing..... When I go to see the people in Leeds, I get a different story with the scare words, 'very aggressive' and 'high risk' and 'strong family history' in their letters.

I made a formal complaint about the GP practice. No joy there, denied everything naturally, so raised to NHS England. Again no joy, the words 'sorry you are not happy' etc does not suffice. Raised to the Ombudsman who take a peek. "Unfortunately, as neither the GPs nor the health assistant made any notes we can not investigate any further." So that's the GPs' 'get out of jail card free'. What an absurd and stupid position. However the practice was instructed to make changes to it's recording procedures and contact with patients among other things. NHS England was instructed to issue a complete apology. And that was it. I changed to another practice immediately after researching them on the NHS website, choosing them as they were rated 89%. However, during my 2 year hormone therapy treatment I did not have a PSA request form one day and, although the nurse knew the situation, she needed the GP's permission. He told her I did not need a PSA test......

I sincerely hope there have been improvements in this field since 2011 wicher, I really do. Now that PCa is the most common cancer for men and with celebrities helping to raise awareness, there really is no excuse for GPs to get it so wrong any more.

Edited by member 04 Nov 2018 at 12:19 | Reason: Not specified

User

Posted 04 Nov 2018 at 12:17

Hi Bill,

From what I've read and from what they told me at the hospital, given our relatively young age a prostatectomy would have been advised anyway. The drawback of the delay in treatment is mostly a *much* higher chance of recurrence (I used the mskcc nomograms). I am thinking side effects would have been less as well as they wouldn't have had to cut away as much tissue (eg, 10 lymph nodes in my case), but the urologist seemed to say it doesn't make any difference.

Cheers, Wicher

User

Posted 04 Nov 2018 at 12:40

I am so sorry to hear this story Mr Angry, very shocking. Indeed the GP gets let off because they failed to make notes, this is terrible. Hard to comprehend that even the urologist didn't order a biopsy.

Perhaps a sign things are improving is that my practice was put into administration because of consistently bad CQC reviews, probably that should have happened years ago. Also the new head of the practice was keen to follow up on previously missed PSA readings.

However, even in 2017 things are not right. A roommate in the hospital was refused a PSA test by his GP even though the warning signs were screaming PCa: blood in his sperm, many close family members with PCa (several of whom had died), and black ethnicity. Fortunately he went to another GP who immediately ordered the test, which led to a prostatectomy and likely his life saved.

User

Posted 04 Nov 2018 at 12:55

Yes wicher, I agree. The main point for me is that its more than likely that an earlier diagnosis would have meant more nerve sparing.

I cant believe there is so much controversy over routine PSA testing and some Drs even refuse to do it when requested.

Mr Angry, I can understand why you're called Mr Angry. This situation has been eating away at me for nearly two years. With on going ED a constant reminder that only 50% nerve sparing was possible.

Cheers
Bill

User

Posted 04 Nov 2018 at 14:45

Yes Bill it must be maddening to know that the side effects could have been much better with earlier treatment, which you should have got. And it is even worse for Mr Angry.

I don't understand the controversy on PSA screening either. My impression is that the top surgeons tend to think routine screening should be done. Various clinical trials are claimed to show little benefit, but there are methodological caveats and some say the trial results do not mean we should refrain from screening but that treatment needs to be rethought (ie to reduce overtreatment).

User

Posted 04 Nov 2018 at 15:02

Thanks for the reply Sandra, indeed I was lucky to still be treated just in time. Now just a bit of pointless fury at the GP before I do a new PSA test. I trust most GPs are well aware of what to do, but it seems a significant minority isn't unfortunately, sharing stories here might help to combat this.

User

Posted 04 Nov 2018 at 17:12

Originally Posted by: Online Community Member

The PSA controversy is either / both of:

- The medical profession scared of over treatment

- Limited funding driving diagnostic decisions

Any grief pay to get it done privately and demand a urology referral if the nubmers look iffy

User

Posted 04 Nov 2018 at 18:16

Mr Whicker, (is it Alan?)

I have much the same story to tell. I have English friends in America whose medical insurers find it financially expedient to have them examined via DRE and PSA tested annually.

They have implored me on a regular basis: “Get your prostate checked - they don’t do it properly in England”.

And so it was that a transient GP at my practice refused to do a DRE, even though I was in my underpants on his couch for something else, saying, “We don’t do that these days”.

And thus it came to pass that after an incidental / accidental tick on my annual blood test for cholesterol form by a different GP, seven years from my first and only PSA, a raised PSA was discovered. A substantial tumour was discovered, which is out of me now and in a bucket of medical waste somewhere.

I am now / was stage 3a, with every possibility of recurrence. If that GP had fingered me, as requested, or if the same surgery had PSA tested me in between the seven-year gap, I might still be T2a as originally diagnosed, with a much better prognosis.

Am I bitter? Yes, but still breathing, so happy days.

Cheers, John.

User

Posted 04 Nov 2018 at 18:59

Originally Posted by: Online Community Member

I don't understand the controversy on PSA screening either. My impression is that the top surgeons tend to think routine screening should be done. Various clinical trials are claimed to show little benefit, but there are methodological caveats and some say the trial results do not mean we should refrain from screening but that treatment needs to be rethought (ie to reduce overtreatment).

Interestingly, the NHS, NICE, PCUK, Cancer Research UK, the British Association of Urological Surgeons are anti-screening but all are supportive of the prostate cancer pathway. The problem is that a number of GPs seem to be completely incapable of following the pathway - poor training? Cost? Outdated beliefs? Partly all of those but a significant number of urologists don't have regular PSA screening (hence the media frenzy over 4 very experienced urologists being diagnosed with PCa about 4 years ago) and we have members here who are or were doctors or who have brothers who are doctors and refuse to be PSA tested.

I think it rather depends on what you mean by screening - it means different things to different people.

Edited by member 04 Nov 2018 at 19:00 | Reason: Not specified

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

User

Posted 08 Nov 2018 at 11:51

My local hospital only tests to 0.1, anything under that is classed as undetectable round here, and both my surgeon (in the ‘Top Ten’ in Britain, according to his peers and the Daily Mail) and my local oncologist, class any increase to under 0.1 as nothing to worry about. Any reading over 0.2 is classed as biochemical recurrence.

However, I did see a leading oncologist last week who said that consecutive super-sensitive increases such as yours over several PSA tests may be a cause for concern. I guess the nurse will tell you something similar, like come back after a couple more PSA tests and take it from there.

Best of luck.

Cheers, John

User

Posted 08 Nov 2018 at 11:54

Thanks for the reply John, by the way I moved my message here https://community.prostatecanceruk.org/posts/t17640-Super-sensitive-PSA.

Guess I should wait for the next test. But I find the quick rise over a short time worrying (suggesting two months doubling time).

(Edit: Just read Lyn wrote her onco said the same machine can give anything from .02 to .05 for the same sample due to machine noise, which is somewhat reassuring.)

Edited by member 08 Nov 2018 at 12:11 | Reason: Not specified

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