Regular post-operative PSA testing

User

Posted 18 Jan 2016 at 15:06

I was diagnosed in October 2011, had a prostatectomy in November 2011 and my daughter was born in December 2011. Pretty hectic times:). I'm 60 this year and would love to see my little ones into their 20's.

Since being operated on I had private follow-up for the first year and then transferred to the NHS as my circumstances changed. For the second year (2013) I received invitations for PSA follow-up measurements and was discharged from Oncology to Urology. From 2014, however, I have had to present myself to the doctor and request a PSA test (and have done so every 6 months so far) but then receive no notification of the result at all. It's all up to me.

I don't want to seem a prima donna on this because if this is normal I'll deal with it and will decide my own monitoring regime. The main issue for me is that my understanding is that the highest risk of recurrence of the cancer falls within the first 4 years following surgery but that I need to maintain vigilance until the 10 year point when the risk or recurrence reduces enormously. I'm just concerned that there seems to be no management or any follow-up on the condition at all after the 1 year point. Is this normal?

I'll go and request an annual one from now on but it does seem strange that nobody appears to be managing the situation from the professional standpoint.

User

Posted 18 Jan 2016 at 17:34

Hi Gerriant,

I copied and pasted these extracts from the NICE guidelines....hope this may be of some help

Luther

1.3.43Check PSA levels for all men with prostate cancer who are having radical treatment at the earliest 6 weeks following treatment, at least every 6 months for the first 2 years and then at least once a year thereafter. [2008]

1.3.45After at least 2 years, offer follow-up outside hospital (for example, in primary care) by telephone or secure electronic communications to men with a stable PSA who have had no significant treatment complications, unless they are taking part in a clinical trial that requires formal clinic-based follow-up. Direct access to the urological cancer MDT should be offered and explained. [2008]

User

Posted 18 Jan 2016 at 18:05

My understanding is broadly the same as Luther states above:
- for a man that has had radical surgery (or RT without HT) followed by a suitably low PSA and pathology that indicates the surgery was successful, there should be 3 monthly testing for the first year or 2 years, and then 6 monthly testing to the 5 year point at which time it goes to annual testing. For most men, the testing beyond the first 12 months will be done by GP with referral back to urology or oncology if the PSA rises. Men considered to be very low risk post-surgery may go to annual testing at the 2 year point if they are happy with that regime
- for men on HT, PSA testing should be 3 monthly if unstable and 6 monthly if stable or low risk
- men with a pathology causing concern or PSA which is above 0.1 post-op should be monitored 3 monthly for a longer period

I think GPs manage PSA results in different ways. Ours makes clear that it is the patient's responsibility to phone for all blood or other test results. John phones for the result and then lets whichever consultant he isn't seeing know what the score was. The consultant that he is seeing can access the results online during the appointment. But he is in a different situation to you Geraint as he still sees either the onco or uro every three months. As far as I can see, lots of members here are in the same position as you - GP does the test, you phone for the result, if it has risen you see the GP and ask for a referral back to your urologist or oncologist. On the other hand there are members who have the test done by the GP, result is automatically sent to the consultant and the patient can then have a phone conversation or appointment with the consultant if there are concerns. My dad was 13 years post-op with undetectable PSA and had been on annual testing for 8 years when it began to rise - a referral back to the surgeon was arranged by the GP at that point.

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

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User

Posted 18 Jan 2016 at 16:33

Hello Geraint and welcome.

As you have been discharged from both Oncology and Urology I would suspect that it's now check up with the GP. My husband (Brachytherapy) was told by his consultant last time that at the end of his 5 year period he would be discharged into the GP care.

He was having 3 monthly checks, although it's officially 6 months at his stage (I asked him to get them done in the interim for my peace of mind).
He gets the form from the surgery and the results go back there but we have to follow them up. We are not notified. We take those results to the hospital when we go for the appointment.

Have you consulted your GP to see whether he is happy to do 6 monthly checks for you for now?

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

User

Posted 18 Jan 2016 at 17:10

Hi Gerriant,

I have been with the NHS since diagnosis in 2007.

The rule of thumb seems to be that I have a PSA test whenever I or my Consultants ask for it.

For much of the time I have been on a Hormone therapy and would routinely have my PSA tested at 3 month intervals every time I had a HT injection.

The initiative is however with me, I have to telephone my GP's surgery and make an appointment for an injection and blood test.

I then have to telephone the GP's surgery about a week later and ask for the result, they have several receptionists and invariablly they will tell me that the result is 'normal' and I have to specifically ask them for the number.

Having said that the vast majority of the time my PSA has been in the low numbers where the GP and/or their receptionist would consider it to be 'normal'

At times when I have come off HT, I still phone up the GP's surgery and make the appointment for the blood test.

The nurse or phlebotomist taking the blood test invariablly asks 'who is the test for' and I merely give them the name of my Consultant, they never seem to need to see any paperwork.

The only problem I have is that due to pressure of workload I need to book an appointment a couple of weeks in advance, there is no point phoning the surgery and asking for an appointment this week as they are invariablly fully booked.

So as a back up on occassions I will phone my Hospital Urology Nurses who will send me a form allowing me a PSA test at the hospital outpatients, there I merely have to turn up, no need to book an appoitment.

I think a lot of this has to do with taking controll of your own treatment and telling the NHS you need a PSA test, the old addage that 'it is easier to obtain forgiveness than permision' seems to apply.

If you tell them you need a PSA test, tel them the name of the Consultant who needs it, and then phone and ask for the result, it all goes OK. However I have never waited to see what would happen if I did not initiate the test.

Dave

User

Posted 18 Jan 2016 at 17:34

Hi Gerriant,

User

Posted 18 Jan 2016 at 18:05

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

User

Posted 18 Jan 2016 at 19:28

If you want and ask for more frequent testing you may get it?

My current GP, who I registered with 17 months after Robotic surgery in May 2013, wanted his own set of PSA results to assess me by, and asked for 3 monthly testing, I have maintained that frequency. No one has suggested I go to 6 monthly or more yet. If they do I shall deal with that request then. Currently results are all coming back at < 0.1 or < 0.01, latest was November 2015, and all are noted as normal.

dave

Edited by member 18 Jan 2016 at 19:28 | Reason: Not specified

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User

Posted 18 Jan 2016 at 22:18

My oncologist was sticking to the NICE guidelines albeit she got her sums wrong. I had RP and follow up RT.....my first test after the RT was at the 6 month mark....the next two were 6 monthly...then she decided to put me on yearly even though it was only 18 months since my RT...I was fine with the 6 month tests as I can't see the point in putting yourself through the worry of 3 monthly tests.

I felt uneasy about the year test so managed to get the go ahead for a 6 month test. My next test is in March when I see the oncologist for my yearly appointment.
I am not sure the NICE guidelines suggest the 6 monthly testing at two years just for low risk men. If that's correct they have it wrong for me as I am classed as high risk.

I will see what the PSA is in March and take it from there. Obviously I am hoping the oncologist wishes to remain on a annual testing regime

Bri

User

Posted 18 Jan 2016 at 23:02

Bri, you are different - I don't think there is a written protocol about men that have had salvage or adjuvant treatment because as you say, they are high risk. Your onco decided annual testing, you changed that to 6 monthly - John has a very similar story and still sees his consultants three monthly. Different hospital, different men, different cancer.

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

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