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2nd post op PSA result

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User
Posted 20 Mar 2017 at 19:25
Hi everyone

At 6 weeks post surgery, my PSA was 0.014. 2 months further along, it is 0.015. My cancer nurse specialist says that the hospital doesn't view it as an increase. I see my oncologist on Wednesday. I was offered adjuvant radiotherapy last time, so i will be interested in what my oncologist has to say. Haven't a clue what to do.

Ulsterman

User
Posted 20 Mar 2017 at 20:01

That's great news - you may have read in my recent updates that our hospital (an oncology centre of excellence) has concluded that the ultra-sensitive test is unreliable so has completely stopped offering it. It wasn't a huge surprise to us - the urologist told us 3 years ago that if you tested the same sample twice in the same machine, the result (if less than 0.1) could range by 0.04 due to machine noise. It was proved to us when dad had a sample taken and tested twice on two different machines and got two different PSA scores. It seems your CNS is also a little dubious about the reliability of the test at very low numbers.

I don't think the PSA result should be allowed to cloud your decision - base whether or not to have adjuvant treatment on your pathology and how much you have recovered from the op.

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

User
Posted 23 Mar 2017 at 15:09

After 7 years of ultrasensitive anxiety we are sticking with our consultants' advice to have the normal PSA from now on and to continue having it done at Jimmy's. The consistency of the testing regime matters more than anything else, I think ... same time of day, broadly same activities in the few days before, same machines, same lab.

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

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User
Posted 20 Mar 2017 at 20:01

That's great news - you may have read in my recent updates that our hospital (an oncology centre of excellence) has concluded that the ultra-sensitive test is unreliable so has completely stopped offering it. It wasn't a huge surprise to us - the urologist told us 3 years ago that if you tested the same sample twice in the same machine, the result (if less than 0.1) could range by 0.04 due to machine noise. It was proved to us when dad had a sample taken and tested twice on two different machines and got two different PSA scores. It seems your CNS is also a little dubious about the reliability of the test at very low numbers.

I don't think the PSA result should be allowed to cloud your decision - base whether or not to have adjuvant treatment on your pathology and how much you have recovered from the op.

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

User
Posted 20 Mar 2017 at 20:56

Hi Ulsterman. That is indeed good news. We seem to have a very similar set of PCa stats, and I would love to have had a post op PSA of 0.01anything. Sadly, mine was 0.084. Looks like you're on a winning path - keep it up!

User
Posted 20 Mar 2017 at 23:08

There was time when a man made his treatment decision for RP and that was that. It now seems that as a belt and braces approach a number of men are being offered adjuvant RT following RP. The decision on whether to have this seems clearer if the PSA is higher and it looks like the RT may be of benefit. However, whether to follow up with RT when the RP has resulted in a low PSA, at least quite soon, must be a more finely balanced one. Certainly worth discussing fully with your consultant.

Barry
User
Posted 22 Mar 2017 at 20:03

Saw the oncologist today.  A rise of 0.001 (0.014 to 0.015) is probably not a rise in her view.  However, if in three months it is 0.016, she said she would treat as she'd be very suspicious a rise was happening.

So, I'm going to wait rather than do early radiotherapy.

Ulsterman

User
Posted 22 Mar 2017 at 20:12
Hi Ulsterman

For what it's worth - I would have taken the same decision if it had been me.

0.001 is a tiny difference and, as Lynn said, could simply be down to machine error.

Good luck with future tests.

KRO...

User
Posted 22 Mar 2017 at 20:42

John was reluctant (very reluctant) to go for additional treatment until and unless they could prove he needed it (this was a mark of his whole coping strategy which was to deny anything was really going on in his life). In the end, we waited until it got up above 0.15 but in that time he had fully recovered from the op and felt 'match fit' for whatever was coming next.

Statistically, going for adjuvant or salvage RT/HT within 6 months of the op has better outcomes than waiting and having it later but it doesn't seem to have done J any harm. I think your onco is very wise to wait.

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

User
Posted 22 Mar 2017 at 22:32

I have to say the whole PSA testing is very confusing. In particular that the testing is done differently at different labs giving wildly different results.
So we had ours done at a Spire hospital which apparently has a sensitive and 'clean' test and got a result of 0.01. According to the consultant if we'd gone to our local hospital our result would likely have been <0.1 which I understand, it is a less sensitive test.
However he then went on to say that if we'd had it done in Leeds it would probably have been higher than 0.01 because the test is different and counts some things that are not actually PSA in the result. In fact he says that the average PSA for a man post RP is actually 0.08 when measured in Leeds. For a woman the average PSA as measured in Leeds is 0.06. so Graham perhaps your 0.084 is actually no worse than Ulsterman's 0.014.
I'm a trained statistician and I walked out of that office rather befuddled. The consultant then went on to ask where we wanted our 3 months test done. We plumped for the Spire again, i don't think i could cope with trying to compare apples and pears and then try and explain to my overanxious OH why his result that has now doubled is in fact the same and nothing to worry about.
Now that you are probably all as confused as me it's back to the 🍷

User
Posted 22 Mar 2017 at 23:54

If you are at the same Spire as us, they actually send their samples to St James's. Harrogate infirmary comes in around .2 higher than Leeds (for a man that is detectable). Leeds has actually stopped doing the ultra-sensitive test completely because the pathologists have concluded that it is an unreliable test although I see from Bri's post that Doncaster are still doing it. You may have read my posts on this topic in my own thread and on others recently. It isn't so much statistics as machine noise.

Nationally, the average PSA for a woman is said to be around 0.03 but higher just after orgasm. Breast milk has more PSA than that and women with breast cancer higher still.

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

User
Posted 23 Mar 2017 at 11:40

Hi Lyn, just for info, Spire now have their own testing lab and do not send samples to St James any more. All Spire samples are couriered to a central Spire lab. Consultant told us to have it done there as he considered it a 'cleaner' test than at Jimmy's or HDH. By cleaner I read less noise.

User
Posted 23 Mar 2017 at 15:09

After 7 years of ultrasensitive anxiety we are sticking with our consultants' advice to have the normal PSA from now on and to continue having it done at Jimmy's. The consistency of the testing regime matters more than anything else, I think ... same time of day, broadly same activities in the few days before, same machines, same lab.

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

 
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