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Posted 12/19/2024 6:12 PM (GMT -5)
I had my surgery 16 years ago in 2008. I was a G6 with no adverse pathological features. All PSA's have been <0.03, except for 2 from QUEST 8 years apart that both showed .04 which were the wrong PSA test test.......don't get me started......

After doing a lot of reading on G6 and BCR, which seems to happen, most of the studies found that upon pathological review most BCR G6 were upgraded or upstaged. Mine was done in 2008 and I know they used the 2005 ISUP guidelines at Johns Hopkins to review my slides according to Epstein. But, in 2014 there were more changes made to G6 classifications although minor ones. I email Johns Hopkins and asked them to review my slides and the new head of Urology emailed back quickly and said no problem, they will do it and get back to me.

So, I want to know, but I don't want to know.....and what will I do if it changes....nothing but worry more or maybe a little less.
Posted 12/19/2024 6:43 PM (GMT -5)
This was discussed in here in the past. As late as 2020, Epstein was saying that "true" G6 never goes metastatic--it could grow and cause issues, but it never let cells loose into the bloodstream.

What CAN happen is a new tumor can form that is G4 in part.

Now, in your case, you had a confirmed G6 on post-surgical pathology. The only way you can have PSA showing up now is if some bit of prostate tissue got left behind. It's possible that (a) that happened and (b) that it has now gone rogue. Not a great chance--but a chance.

As mentioned a few days ago, it was suggested to you to go back to labcorp and their ultrasensitive test, and do them regularly for several months to see what is happening--if anything.

It's hard to accept, but the reality is that even if you truly are at 0.04 today, it might well be years before your PSA is high enough to be able to find the hot spot on a scan.
Posted 12/21/2024 7:48 AM (GMT -5)

ChrisR said...
except for 2 from QUEST 8 years apart that both showed .04

When was the last 0.04?
Posted 12/21/2024 8:04 AM (GMT -5)
2016 .04 (Quest) Immediate retest at Ohioheath was <0.03

2016-2023 <0.03 Ohio Health

12/2024 .04 (Quest) OhioHealth outsourced labs to Quest

I have found numerous other people who had this happened to them with quest as well. I found one guy on another forum who for three years went back-and-forth with quest, total PSA and neurologist, ultrasensitive PSA and every quest PSA the guy got was .04 Then he’d immediately go to his urologist and his PSA would come back <0.014

Mine have been <0.03 for 15 years except for that one in 2016 at quest and an immediate retest was <0.03

OhioHealth can’t get me into a urologist for a month and they said I have to see a urologist now to get a ultrasensitive test
Posted 12/21/2024 8:19 AM (GMT -5)
you can go to the labcorp or quest site and buy the psa test you want on your own. Insurance may not cover but they are not that expensive and it can save you a trip to the urologist, and give you some peace of mind.

https://www.questhealth.com

https://www.ondemand.labcorp.com/products
Posted 12/21/2024 9:44 AM (GMT -5)
Chris R,
I’m in a completely different PCa situation than you, but after 6 years of being undetectable, yesterday my PSA came back at 0.01. I lost the less than sign (<).

I’m finding it a bit unnerving. What are the odds that the PSA would return right at 0.01 instead of 0.02 or above. Maybe the technician just forgot to enter the < sign into the portal, but I doubt it. What kind of error might have caused the sign loss. If it was blanked out properly then probably none. Either PSA is back, or it isn’t. I even noticed online that many researchers consider 0.01 to be undetectable, but I think that’s artificial and just helps them fit patients into their studies.
So, I see the MO on Tuesday. He’ll probably just say don’t worry about it. Right, sure thing. I may ask for retest in a month’s time.

I think the result is real, but it would have made life easier in many ways had it come back at 0.02. Then I would know for sure. There’s not much worse in life than holding onto false hope. Ain’t prostate cancer fun?

PS, I checked in the portal and the test wasn’t charged. Roche Elecsys, or something like that.
Posted 12/24/2024 11:59 AM (GMT -5)
Update on losing my < than sign.

I saw my MO today and he apologized for my PSA result. Interestingly, he said he has had a string undetectable guys over the past 2 weeks with PSA results coming back at 0.01. Don't worry about it, there's something going with the lab, you're still undetectable.

Whew! I thought something seemed fishy. Merry Christmas everyone.
Posted 12/24/2024 3:34 PM (GMT -5)
Mattam,

Congratulations. I am elated for you.

Thank you for dropping me a note and for the encouragement. I am concerned but thinking it is another reporting error like I had 8 years ago when I got the exact same value.

Did u test at quest as well?
Posted 12/24/2024 5:33 PM (GMT -5)
Mattam,

Congratulations on another "Undetectable." A very nice Christmas gift to you.

Merry Christmas to you and your family.

Ron (Boomer)
Posted 12/24/2024 6:25 PM (GMT -5)
Thanks guys, it is a great Christmas present. I was feeling very bummed from Friday until today. My MO, who I’ve had for 6 years, knows me well. He said he was thinking I probably **** my pants when I saw the PSA on the portal.🙂

@ChrisR: No the hospital has an in-house Roche Elecsys setup. I hope it turns out to be lab error for you too

I’ve always wondered how I would feel if my PSA returns before something else takes me out. I guess I now know, and it ain’t very good.

Merry Christmas all
Posted 12/24/2024 11:48 PM (GMT -5)
Congrats mattam,
To all, celebrate this Christmas and New Year with all my best wishes.
Jack
Posted 12/25/2024 10:16 AM (GMT -5)
That is indeed a great Christmas gift Mattam. Enjoy the holidays
Posted 12/26/2024 12:43 PM (GMT -5)
My second biopsy showed an increase in volume but all were G6 John's Hopkins upgraded one core to G7 so with my oncologist advice I had radiation-regular type but got retention and had severe back pain issues and went to SBRT PSA down now to 0.6 three years out

My point is that I choose treatment mainly over the large volume not the Gleason score so much.

Happy New Years my friends

Glen
Posted 1/15/2025 3:55 PM (GMT -5)
John's Hopkin's reviewed my slides from my surgery in 2008. They concurred with the original diagnosis. No change. Still a Gleason 6......it is interesting with all the changes to Gleason grading that nothing changed with me from back then until now......

Now I just have to find a Dr. that will order an ultra sensitive PSA....OhioHealth won't do them anymore since they switched to Quest.
Posted 1/15/2025 4:40 PM (GMT -5)
You might check on the labcorp website. You might be able to request it without a dr order?
Posted 1/15/2025 5:07 PM (GMT -5)
I did...thanks....they don't offer the ultra sensitive test.....
Posted 1/15/2025 8:27 PM (GMT -5)
I use Request A Test $109 for Lab Corp Ultrasensitive. Purchase test online and make my appointment at nearest Lab Corp service lab. Usually get results in two days.
Posted 1/15/2025 11:02 PM (GMT -5)
Do you if it is test number 140731 that you ordered.

It says the range for that test is 0-4.00
Posted 1/16/2025 7:27 AM (GMT -5)

ChrisR said...

Do you if it is test number 140731 that you ordered.

Yes, that is the Labcorp order number for their ultrasensitive psa test, described here, and please note the sample report linked therein:

https://www.labcorp.com/tests/140731/prostate-specific-antigen-psa-ultrasensitive


I have been getting that exact test several times yearly, for years. I believe LabCorp may offer the 140731 through their on demand web service, but be careful you get the ultrasensitve vs standard test version. The ultrasensitive version will cost around $100 (in 2025), give or take, depending on discounts being offered.

I get my LabCorp 140731 through another walk-in testing service which will pop up if you google:

psa + ultrasensitive + walk in

There may be multiple online services available. They basically handle getting the doctor's order, finding a local LabCorp testing office for you, and tracking your results into an online account only you can access. The one I use is fully automated. I do not have to speak to anyone except the lab tech that does the blood draw. Results are posted next day in 90% of my tests, sometimes it takes two days. The service I use cannot serve residents of New York, New Jersey, or Rhode Island due to state laws on direct testing. I guess you have to get a doctor's order in person in those states?

When ordering that test, you may see warnings to avoid biotin supplements for 72 hrs before the blood draw. Biotin is found in many multivitamins, hair products, etc. Please pay attention, else you may get screwy results and waste your money:

https://pmc.ncbi.nlm.nih.gov/articles/pmc11534403/

Regards,
Robert
Posted 1/16/2025 2:16 PM (GMT -5)
Thanks for the help Robert. I went online and found a place to order it from LabCorp and went at lunch.....now the waiting begins...I have never had a PSA done at LabCorp so we will see what happens.
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