Interval between PSA testing following RARP

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.

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."

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

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.

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

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

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. 

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