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Rise of PSA after RP

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User

Posted 20 Oct 2020 at 15:50

I'm 50 years old, and had an RP last November after being diagnosed with Gleason 9 (4+5) cancer, margins were clear and there was no extracapsular extension, but the report showed that there was possible lymphatic invasion.
My first two PSA readings ain Feb and July showed PSA as undetectable (<0.01). However, I retested (on my own initiative) two weeks ago and found that the PSA was now detectable at 0.03. I called the consultant immediately and while he agreed it was not a good development, he said it was far too early to decide further treatment, that I should wait another 8 weeks to see if there was a trend. He said it's possible that the cancer had spread to a bone or lymph node and I might need radiotherapy.
As you can imagine I am extremely upset at the news of a recurrence and also having to wait 8 weeks is really nerve-wracking.

Any thoughts or support would be greatly appreciated,
Peter

User

Posted 21 Oct 2020 at 04:39

I had a prostatectomy two and a half years ago, and my local billion-pound super hospital only tests PSA to 0.1, so <0.1 is classed as undetectable. I had a test at the Royal Marsden Hospital who test to 0.04 and again my PSA was undetectable.

So if you had been tested at either of those hospitals your PSA would be undetectable also, and you wouldn’t be worrying now. It is wise to keep an eye out for possible recurrence, of course, which is why you have three monthly PSA tests.

Make sure any future tests are all done at the same place, and don’t waste your money by having private tests done elsewhere. Try not to worry too much.

Best of luck.

Cheers, John.

User

Posted 22 Oct 2020 at 02:18

Originally Posted by: Online Community Member

Hi John

I think the consultant wanted a more supersensitive test because of my Gleason 9 diagnosis. But if testing was only done to 0.1 I'd be a lot calmer!

Peter

So your consultant would be stymied here in Coventry or at the Royal Marsden as they don’t bother with what’s called super-sensitive assay, and who only test to the levels mentioned above.

My surgeon and two oncologists I have spoken to, say super-sensitive testing causes more trouble than it’s worth, just as the anxiety you are now experiencing shows.

Best of luck with your next test.

Cheers, John.

User

Posted 22 Oct 2020 at 07:32

I too had Gleason 9 and it does seem to be the thing my oncologist is most concerned about. They don’t tend to mess about with a 9. I also had positive margins, extra capsular extension, perineural invasion.

My post Surgery psa was 0.014. Over the year it went up to 0.023. My oncologist said something was going on. The problem is, with such low readings it’s almost impossible to find out what is going on.

At the risk of wasting my money, I paid was a psma scan. It actually work and found small areas of cancer is two pelvic lymph nodes. After targeted salvage radiotherapy, my psa is now >0.006 and has been since August 2018.

The sensitive psa test seems to cause as much controversy in the urological community as it does in this forum. I credit it with saving my life. How long would I have waited at >0.1 whilst the cancer was spreading?

In your case, you know something might be going on and that’s a good thing. They’re monitoring you and you’re on their radar screen. They’ll move quickly enough if they feel they need to

if you do need srt, ask about hormone therapy in combination. I had 3 months bicalutimide before starting with 18 months in total

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User

Posted 20 Oct 2020 at 18:45

Peter, what was your final staging on histology? How many lymph nodes were removed?

User

Posted 20 Oct 2020 at 22:46

Hi lots of posts on here about super sensitive PSA tests and the angst they may unnecessarily cause. At a reading of 0.03 it could just be a blip due to m/c noise or maybe tested at a different place. You may have done something different in the 48 hours before the test eg sex, physical exercise etc.

However it certainly isn’t classed as a recurrence at this stage. Another test in a few months will probably put your mind at rest

Bri

User

Posted 20 Oct 2020 at 23:02

What a shame that the specialist reacted that way - it doesn't seem very responsible of him or her. You do not have a recurrence unless your PSA rises above 0.2, or you have three successive rises over 0.1 ... you are a long way from that yet.

When you say you arranged an extra PSA test on your own initiative, did you get it done at the same place as your previous PSA tests? Was it processed at the same lab? Did you have it done at the same time of the day? Any of these could explain the difference.

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

User

Posted 21 Oct 2020 at 04:39

Make sure any future tests are all done at the same place, and don’t waste your money by having private tests done elsewhere. Try not to worry too much.

Best of luck.

Cheers, John.

User

Posted 21 Oct 2020 at 06:48

Never change or initiate treatment on the basis of one PSA test.

Wait for your next "official test" (within 3 months) if that is 0.03 or above you need to see an oncologist and take their advice. G9 may warrant adjuvant or early salvage radio therapy.

User

Posted 21 Oct 2020 at 14:28

Hi Lyn

Yes I got it rechecked at the same clinic, the time of day was slightly different, I had it done around lunchtime, normally I'd get the test done early morning. I think my consultant is concerned at the rise because of my Gleason 9 result. He probably won't let it get anywhere near 0.1 without further treatment.

Peter

User

Posted 21 Oct 2020 at 14:30

Hi John

I think the consultant wanted a more supersensitive test because of my Gleason 9 diagnosis. But if testing was only done to 0.1 I'd be a lot calmer!

Peter

User

Posted 21 Oct 2020 at 14:33

Hi Bri

Yes, I am going to retest in 4 weeks' time. Unfortunately, given my Gleason 9 score, I am expecting the worst and am already prepared for further treatment.

Peter

User

Posted 21 Oct 2020 at 14:36

Hi Lexi

My stage was Stage 2a, no lymph nodes were removed. I'm not sure why, maybe because the biopsy originally suggested Gleason 7. But the histology report did show some "lymphatic invasion".

Peter

User

Posted 21 Oct 2020 at 14:42

Hi francji

I'm to be retested in 4 weeks' time, so a plan of action will probably be put in place then.

Peter

User

Posted 22 Oct 2020 at 02:18

Originally Posted by: Online Community Member

Hi John

I think the consultant wanted a more supersensitive test because of my Gleason 9 diagnosis. But if testing was only done to 0.1 I'd be a lot calmer!

Peter

So your consultant would be stymied here in Coventry or at the Royal Marsden as they don’t bother with what’s called super-sensitive assay, and who only test to the levels mentioned above.

My surgeon and two oncologists I have spoken to, say super-sensitive testing causes more trouble than it’s worth, just as the anxiety you are now experiencing shows.

Best of luck with your next test.

Cheers, John.

User

Posted 22 Oct 2020 at 07:32

In your case, you know something might be going on and that’s a good thing. They’re monitoring you and you’re on their radar screen. They’ll move quickly enough if they feel they need to

if you do need srt, ask about hormone therapy in combination. I had 3 months bicalutimide before starting with 18 months in total

User

Posted 22 Oct 2020 at 08:01

Hi Ulsterman

Even though it was G9, I thought with the negative margins and no extracapsular I might do a bit better, so I'm quite upset about it. But as you say it's better to know early if something is happening and get treatment asap for a better prognosis.

Stay safe and healthy!

Peter

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