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Interval between PSA testing following RARP

User
Posted 11 Sep 2020 at 10:11

I  was due for a check up with a nurse last February but this did not take place, I assume due to C19.  I was not concerned since my PSA was undetectable and there was nothing really to discuss. I had still heard nothing by 1  June but I went along for my next 3 monthly  PSA test which was undetectable. On 31 July I had finally had phone call from the nurse which was uneventful. She subsequently wrote a letter to the GP confirming that all was well and she would “see” me again in December when I would need a further PSA test. By my reckoning, my next PSA test was due in September, 3 months after the June test. However, the nurse at the GP’s refused, on the basis that the Urology nurse has advised that the next PSA test is not due until December, which is just short of 7 months after my last test. This   is outside of the NICE guidelines  which state that PSA  tests should take place at intervals of  between 3-6 months following a prostatectomy.  To date,  my tests  have been every three months. The nurse was adamant about this and would not be persuaded.  Neither a Dr or the urology nurse could be contacted. I was a bit taken aback by this. Whilst the cancer was contained etc, it was on both sides of the prostate and I consider that it’s a bit early to be adopting a  casual approach to testing. I have arranged a private PSA  test and will get the results in few days. However, to say that I am annoyed is an understatement. Has anybody experienced this sort of thing? I am considering a complaint but I am unsure to what extent the GP surgery is required to follow the NICE guidelines. 

 

User
Posted 20 Sep 2020 at 08:47

I took Andy's suggestion and emailed PALS after having difficulty contacting urology. They (urology) have now sent a PSA test form as well as booking urology and ED appointments. 

As for my GP practice and letters to GP's.. one doctor called me in when I requested repeat tadalafil prescription. She was reluctant to prescribe the 4 x 20mg per month as requested by my surgeon. Even reading his letter, she questioned why I should be having it, implying that I just wanted an erection. That meeting was the lowest point of my cancer journey. 

Edited by member 20 Sep 2020 at 08:49  | Reason: Not specified

User
Posted 20 Sep 2020 at 15:47

Hi 

What's the plan for Dec 20 then ? And will your med. record include this result ?

I'm like 'pro sixty'  , PSA tracker and I'm post op 5 yrs.  All very simple.

Only issue is I tend to ask for results. Ie phone Urology at hosp. NOT GP as a letter doesn't appear to get auto generated from Tracker that the hosp would administer.

I assume it's down to whose budget it's come off ? I've never asked.

If you look at my profile I think I was still 3 or 4 monthly checks at 4 yrs. 

All the best.  If I remember correctly my surgeon saw me up to 24 months post op.

Regards

Gordon

 

 

 

User
Posted 23 Sep 2020 at 00:53
Can you not change GP or, failing that, write to the practice manager pointing out how unacceptable the nurse's attitude is to a cancer patient? They may be desperate to get rid!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

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User
Posted 11 Sep 2020 at 11:25

You should be able to contact the consultant's secretary, and you can ask for a PSA test. If you can't contact anyone at the hospital, contact PALS at the hospital, and they should be able to sort it out. You will still be under the hospital for your prostate cancer care at this stage, so they probably haven't yet written to your GP explaining what the ongoing care regime is.

Unfortunately, lots of GP's (and their staff) know very little about prostate cancer. That is in part why some patients are picked up too late. Before COVID-19, some hospital urology departments/consultants were trying to fix this by running GP training sessions for their referring GP's. I rather suspect that's stopped since COVID-19.

User
Posted 11 Sep 2020 at 12:46

Zebulon / Scholars

I think I understand the wording, but what is the latest NICE guidance on the period between PSA testing

I suspect your GP nurse may be taking her six month period from your last appointment not your last test. Either way she is not being sympathetic to your needs. 

Thanks Chris

 

 

User
Posted 11 Sep 2020 at 12:56

My surgeon's letter to my GP says...

"...Nonetheless there is still a 10-15% chance of relapse over the next 5 years and therefore need to keep a close eye on his PSA , every 3 months the first year, and 6 monthly after that for around 5 years."

_____

Two cannibals named Ectomy and Prost, all alone on a Desert island.

Prost was the strongest, so Prost ate Ectomy.

User
Posted 11 Sep 2020 at 13:29

You should ask your Hospital Urology Nurses about the NHS "Tracker" system for regular PSA tests. I thought this was pretty much standard. Following a PSA test I get another form to take to the GP Nurse every 3 months. Blood taken, sent to hospital lab, urology dept send me the result with another form for 3 months later. Process repeats..................

Edited by member 11 Sep 2020 at 13:31  | Reason: grammar

User
Posted 11 Sep 2020 at 15:18

I think it all comes down to the letter your surgeon sent to your GP - if he asked for 3 monthly PSA monitoring for one year / 2 years / whatever, and then 6 monthly tests for the next 4 / 5 / 10 years, that is what your GP practice should be doing. If the surgeon didn't specify frequency, then the GP practice will follow the relevant guidelines for your NHS trust / CCG rather than NICE .... NICE guidelines are just that and a Trust or CCG can decide not to follow them.

Having said that, NICE makes no mention of 3 monthly testing after prostatectomy:-

1.3.44  Check PSA levels for all people with prostate cancer who are having radical treatment no earlier than 6 weeks after treatment, at least every 6 months for the first 2 years, and then at least once a year after that. [2019]

https://www.nice.org.uk/guidance/ng131/chapter/Recommendations 

 

Edited by member 11 Sep 2020 at 15:18  | Reason: to activate hyperlink

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

User
Posted 11 Sep 2020 at 16:06
I have had umpteen PSA tests in the 28 months since my op, all have been undetectable.

I have extended my tests to six months now, as even if I have a biochemical recurrence, the treatment plan would not change much, another test three months later and then a check if the rate of increase or doubling was worrying, followed by HT, scans and RT.

I really am not bothered, whilst I empathise with others concerned about forthcoming PSA results, what can you do?

My friend on active surveillance for five years tells me his latest MRI has shown a reduction in tumour size and his PSA is down to 6. He follows a strict health, exercise and dietary regime, and his urologist, Professor Whocannotbenamedhere is amazed.

I’ll ask him to let you know what nuts he’s eating and which vintage Bordeaux!

Cheers, John.

User
Posted 19 Sep 2020 at 23:32

 

 

After the refusal of my GP practice to give me a PSA test I have now received the results of the test that I arranged privately; PSA is less than 0.03 ug/l. My continence is is at about 99% ( odd drip when I am very tired) and and I am now back to early morning erections with viagra making up for any ground lost following the RARP.I am very pleased with this, since  only 50% of the nerves were spared. Whilst there is obviously no certainty that this will continue, I hope this account  will provide some encouragement for anybody with a similar staging and Gleason score (although everybody’s journey is different).

After  arranging the private PSA test I spoke to my nominated hospital nurse who was not impressed with the GP’s decision to refuse the test. She advised that the hospital would have  agreed to a 3 monthly tests, at least until the 24 months mark. It would appear that the hospital letter was ambiguous. The GP nurse refused the  test  without any enquiry into why I thought the it was necessary or whether I was overly anxious or stressed. She  appears to have decided that I had made the appointment for nothing more than  the excitement of another PSA test. The level of  care that I have received  from the hospital has been excellent,  but the standard of care from  the GP practice has been lamentable, starting with the their failure to even inform me of the biopsy results at the very start of this saga. However, rant over , I am happy to get on with life and hope others with a similar diagnosis (see my profile) will take some comfort from my journey to date.

 

User
Posted 20 Sep 2020 at 02:45

When you say the ‘GP practice refused to give me a PSA test’, what do you mean? Who refused, and why? A PSA test costs the NHS about eight quid! (stand to be corrected). How much did you pay? My mate (too posh to NHS) pays £150.

Your profile doesn’t say when your prostatectomy was, apart from December but anyway, you need ongoing PSA monitoring for months and years afterwards. I have extended my own PSA tests to six-monthly as it’s over two years since my op.

I have discovered that GPs know very little about PCa, and practice nurses even less, so don’t pay for a private test again, get set up with a regular testing regime at the surgery where you are, or find another doctor.

Here’s to future undetectable tests!

Cheers, John.

Edited by member 20 Sep 2020 at 02:47  | Reason: Not specified

User
Posted 20 Sep 2020 at 08:47

I took Andy's suggestion and emailed PALS after having difficulty contacting urology. They (urology) have now sent a PSA test form as well as booking urology and ED appointments. 

As for my GP practice and letters to GP's.. one doctor called me in when I requested repeat tadalafil prescription. She was reluctant to prescribe the 4 x 20mg per month as requested by my surgeon. Even reading his letter, she questioned why I should be having it, implying that I just wanted an erection. That meeting was the lowest point of my cancer journey. 

Edited by member 20 Sep 2020 at 08:49  | Reason: Not specified

User
Posted 20 Sep 2020 at 13:13

Hi John

The RARP took place on 11 December 2018. G7 (3.4), organ confined, negative margins and no perineural invasion. Pre op PSA was 4.6.
 Up until now I have been getting PSA tests every three months. The nurse refused on the basis that the test was “not due” and refused to  engage in any discussion of this. I asked her  to speak to a Dr but she refused. It occurred to me that she was saving the practice some money, but if the test are only about £8,  surely not ??
I used a reputable online service which cost £70. Taking the sample was easy and I got the results 2 days later. They were posted on my online account. This was followed up by a call from a nurse who explained the figures. Prior to the test I was asked to complete a form which required details of the diagnosis and the operation. 
The cost of the of the private test was not a problem for me, which is fortunate. However the GP nurse appears to have little regard for the well-being of men who require these test after undergoing a prostatectomy. In my case, does she really think that I booked a morning off work and made an appointment for the excitement of another PSA test? She made no attempt to ask why I thought I needed the test or to assuage any concerns that I may have had. As stated in my previous post, the standard of care in this case was lamentable. 

Edited by member 20 Sep 2020 at 13:16  | Reason: Not specified

User
Posted 20 Sep 2020 at 15:47

Hi 

What's the plan for Dec 20 then ? And will your med. record include this result ?

I'm like 'pro sixty'  , PSA tracker and I'm post op 5 yrs.  All very simple.

Only issue is I tend to ask for results. Ie phone Urology at hosp. NOT GP as a letter doesn't appear to get auto generated from Tracker that the hosp would administer.

I assume it's down to whose budget it's come off ? I've never asked.

If you look at my profile I think I was still 3 or 4 monthly checks at 4 yrs. 

All the best.  If I remember correctly my surgeon saw me up to 24 months post op.

Regards

Gordon

 

 

 

User
Posted 21 Sep 2020 at 01:49
I am afraid your nurse was negligent.

You could probably go to four month testing, soon to change to six months. As I’ve said before, the regimen if you have successive increases would be the same; HT and RT, involving a three month test after the first one that was cause for concern.

Cheers, John.

User
Posted 21 Sep 2020 at 21:36

I agree with Bollinger. Nurse not up to speed with your issues Zeb.

User
Posted 21 Sep 2020 at 22:48
NICE guidelines are 6 monthly testing for the first 2 years and then annual - she is playing it by the book. It would have been easier to challenge if the surgeon had been more specific in the post-op letter.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 22 Sep 2020 at 03:40

All the advice I have had from sundry clinicians is for three-monthly PSA post-prostatectomy testing for up to two years and then longer subsequently. Don’t forget, three of my close friends had (have) post-operative recurrence, and six-month tests might not have shown it up on time.

I think not-so-NICE is just out to save money as usual for the bottomless pit which is the NHS!

Cheers, John.

Edited by member 22 Sep 2020 at 04:29  | Reason: Not specified

User
Posted 22 Sep 2020 at 10:04
I'm not sure that it can be about money - in all the years I have been here, I have never seen anyone have problems getting a 3 monthly PSA post-op until this year - it is a 2020 thing and so I wonder if it is to do with COVID rather than cash - a sort of "how dare you come and make a non urgent appointment' mentality?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 22 Sep 2020 at 23:41

I think the refusal was down to the policy of the GP practice and the nurses reading of the letter. The hospital nurse was clearly not happy that I had paid for test. She stressed  that in future , if I considered that I needed a test, I should ring the hospital and discuss it with her.

As stated above, my GP practice is not the best and the nurse that I was faced with  is not very pleasant at the best of times. What annoyed me more than anything was her dismissive attitude. Had she attempted to offer a reasonable explanation for her refusal, I would still have  paid for the test, but not been so annoyed at the practice. As my wife points out, how something is said is often more important than what is said.

I should be ok for the next test in December, but if I am discharged from the care of the hospital after that, I will be wholly dependant on the GP. I suspect that I will be paying for a few more tests over the coming years. 

User
Posted 23 Sep 2020 at 00:53
Can you not change GP or, failing that, write to the practice manager pointing out how unacceptable the nurse's attitude is to a cancer patient? They may be desperate to get rid!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 28 Nov 2020 at 13:12

John,

 

Would it be possible to email me the details for Professor Whocannotbenamedhere?

New to the site so not allowed to send emails yet

thanks

 

User
Posted 28 Nov 2020 at 13:39
Just google retzius sparing London - he isn't difficult to find
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

 
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