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Worried about recurrence years after radical retropubic prostatectomy

Posted by crhoads @crhoads, Jan 20, 2025

I had RRP in 2008 at Johns Hopkins by Dr. Partin. I was 42. My post-op was Gleason 6 totally contained with no adverse pathological features. All PSA have been < 0.03 This year my Dr. switched to Quest labs and my PSA came back at .04 I had a life insurance physical 8 years ago and they sent my blood work to Quest and I got the same reading. Quest has a history of not reporting the "Total, PSA" test as < 0.04 So, being paranoid as I am I went to LabCorp and got an ultra sensitive PSA. 1st one I have ever had and it came back as .021 I had Johns Hopkins pull my prostectomy slides and re-read them and they said I am still Gleason 6 or GG1 organ confined by today's standards and total confined to prostate. I am now in freak out mode because LabCorp test should be < .006 for undectectable. I was told by JH that GG1 has a 4/10% of recurrence and they don't believe reading below .03 are accurate.....yet LabCorp does it all the time....so I have BCR with a cancer that by today's grading does not have the ability to spread, yet it has in my opinion.

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heavyphil | @heavyphil | May 12 6:31am
In reply to @crhoads "Another update. I found an Oncologist at the Cleveland Clinic. I am in Columbus, OH so..." + (show)
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Another update.

I found an Oncologist at the Cleveland Clinic. I am in Columbus, OH so they weren't too far. The guy I saw has been in practice for 25 years. I was telling him my whole story and he stopped me in the middle and asked if any of the other people I consulted mention "benign glands" as a cause. I said no and he acted surprised. He said when the see men like me with my pathology and a detectable PSA that the most probable cause is benign tissue. He told me he did NOT think it was recurrence. They see this type of thing from time to time and it has never progressed in a person with my post-op pathology. So I asked him when I should re-test and he said one year like always.

A couple notes, he also said the PCA is not like other cancers. Even if my PSA was from recurrence it took 17.5 years to reach 0.028 and it would continue to move at this pace. You don't wake up one day and suddenly your PCA became more aggressive. It pretty much moves at the pace it was moving when discovered. I have heard this from Dr. Schultz as well. So in another 17.5 years I might have a slightly higher PSA he said....This is what they see at the Cleveland Clinic......So, I feel slightly less concerned.

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@crhoads Yes, my Urologist said the same thing - benign tissue is often left behind in nerve sparing techniques.
However, in my case, the rise happened at 5 yrs and it went from 0.01 to 0.18 in about 2 years so the velocity was definitely a factor.
Yours is different but you might want to retest in 6 months if it eases your mind a bit.
Phil

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kujhawk1978 | @kujhawk1978 | May 12 8:09am

Well...

As others have said, what, me worry...!?

Yes and no...

Even though you are years out, it is not a fire and forget for PCa patients, it does generally require lifelong surveillance.

I have friends who had surgery around the time I did. They see their urologist once a year, talk about the weather, vacations, grandkids...me...not so.

The clinical data you describe does not indicate sufficiency to act, aka, treat.

You do not have any of the high risk factors such as GS 8-10, GG 4-5, rapid PSADT and PSAV (4 months), time to BCR...

Grab a cup of coffee or an old fashioned, watch this, you can fast forward at times.
https://ancan.us14.list-manage.com/track/click
I think the consensus from the forum is evident, do nothing, continue to monitor.

If you want to focus your energy on doing something then maybe discuss with your medical team what clinical data would constitute a need to treat and what's the collection plan- labs, imaging, genetic testing...

Then sit back, relax, go about living your life!

Kevin
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clevelandguy | @clevelandguy | May 13 7:17am

Hi,
Had the same kind of issue. My hospital network switched from a certain lab to Quest. My PSA went up but has been stable over a few tests. Each lab used a different test method. Talked with my GP and we both agreed just to monitor and as long as it stays steady not to worry.
Dave 3+4

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chippydoo | @chippydoo | May 14 6:39am

If I am worrying about tomorrow, I am missing the blessings of today. BCR is always in the back of my mind as I have and been treated for it. I have learned to live mostly rent free of it until the week before my next test.

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