3 month follow up

Re: the staff Mayo urologist she said < .1 is what they're looking for.

Somebody else in this forum said that Mayo required it to be < .01 to be considered undetectable.

Seem to have a definite conflict of information here, and the fact that you only got one decimal point is puzzling since others at Mayo get three, Including your brother. Sounds like this urologists only requests one digit because they considered it undetectable If below .1.

@jeffmarc -- Thanks for weighing in and you raise a couple of good points. First, doubling checking what I wrote above and my lab reports, I misspoke above. My brothers psa and my psa 3 months ago was ".04", not ".004". Ugh; sorry about that. Second, I remember seeing that previous comment about "< .01" and I simply attributed it to human error because what I had consistently seen and heard were references to "< .1". But I probably should have inquired then rather than just assuming I knew what was going on. That said, here's what I do know for certain after double checking my lab reports: First, my latest psa report says "< .1" and that same psa report also explicitly states that "free psa is below detectable limits". Second, I just got off the tele visit with a staff Mayo urologist (unfortunately before I read your comment) and she clearly stated to me that "< .1" is what they're looking for. One thing I didn't clarify in my comment above is that neither my brother nor myself have been using the Mayo lab for psa testing (and in fact my brother isn't a Mayo patient at all). We both live remote and use the same local lab (Quest). At this point, I am sure of 2 points: First, what my latest psa test says and what I heard this morning from a staff Mayo urologist at my 6 month tele visit. I'm also reasonably sure "< .1" is what I heard 3 months ago from a different Mayo staff urologist at my 3 month checkup (especially since .04 is greater than .01 so if .01 was the threshold than I'm pretty sure the Mayo urologist would have discussed it further at my 3 month checkup). Sorry for the confusion and thanks again for questioning it.

I had NNS RARP in June of 2024. My first PSA in September was 0.26. Six weeks later it was 0.41. PSMA PET in December showed matastisis to lymph nodes. I am now on Eligard and Xytiga. I start 45 sessions of radiation in April. What a fun 7 months it has been!

@jc76 Thanks. One thing that helped me dive deeper was my brother who's a 30 year PCa survivor of both surgery and extensive radiation just coincidentally happened to get his annual PSA at the same time as my 3 month psa from the same lab. Both of our orders were for just the "standard" psa (not the ultra sensitive one). My brothers psa has been undetectable for decades, and he also got a .004 just like I did. That led me to check on the machines used. When checking on the machines, it appeared that the specific calibration for a given machine will affect where the "floor" is for a given machine. Since I had my brothers .004 from the same lab within a day or 2 of mine, I surmised that .004 was "undectable" for (what I strongly suspect) was the same exact machine calibrated to that level. I don't know, but I suspect even though my lab order was for a "standard" psa, they used an ultra sensitive machine for their own convenience at the 3 month check. At my 6 month check for a "standard" psa, for whatever reason they used a less sensitive machine. I could well be wrong, but it sure fits the data I saw on the 2 lab reports. Meanwhile, at my 3 month visit with the staff Mayo urologist she said < .1 is what they're looking for. I have my 6 month visit later this morning so I'll see what she says this morning. So far, I'm pretty relaxed about it but I'll report back after my televisit in 5 hours.

I was .63 4 months post surgery, pet scan showing small amount of cancer still near my lymph node , not good , it’s too late now but as I read various comments I’m confused about the decision I made since I too am not ready to “play House” I had one of the top Doctors at Mass General in Boston who does not use robotics. When we discussed options, he mentioned if I started with hormone and radiation first , there was a chance surgery could not be done later , did I misunderstand his comment? So I had the surgery and didn’t get it all so another 8 weeks of feeling down and can’t help wondering if I made the wrong decision. Very difficult for me despite pumps and pills that haven’t worked yet and now with Hormone shots has anyone been able to have any success with an erection during this additional treatment. I use to look, feel, and act 10 yrs younger than I am , hope to feel that way again 🙏

I was .63 4 months post surgery, pet scan showing small amount of cancer still near my lymph node , not good , it’s too late now but as I read various comments I’m confused about the decision I made since I too am not ready to “play House” I had one of the top Doctors at Mass General in Boston who does not use robotics. When we discussed options, he mentioned if I started with hormone and radiation first , there was a chance surgery could not be done later , did I misunderstand his comment? So I had the surgery and didn’t get it all so another 8 weeks of feeling down and can’t help wondering if I made the wrong decision. Very difficult for me despite pumps and pills that haven’t worked yet and now with Hormone shots has anyone been able to have any success with an erection during this additional treatment. I use to look, feel, and act 10 yrs younger than I am , hope to feel that way again 🙏

Hey Steve, yeah, ain’t life a blast sometimes? I surmise from your results that you either had some small spread presurgically or other factors which precluded total eradication of the cancer by surgical means alone.
But you are in a better spot than if something went undetected for years and was able to metastasize to distant bones where you would have needed even more radiation (SBRT) than the 45 salvage sessions.
I had 25 and it was a lot for me, mostly because of the no gas/full bladder which is absolutely essential for successful treatment. Not only do you want to kill the cancer, but you don’t want to harm anything else along the way.
Every day after a session the tech would say “great job today!” And I would say , “But I just laid on the table!” They would then tell me that all the problems most men face after radiation (proctitis, bladder stricture, etc) come from improper prep: gas in the bowel or less than full bladder.
So you have to do that for over 45 days (DON’T cheat on weekends - you’ll pay for it on Monday) and that is gonna be the most difficult part of the treatment discipline-wise.
But you’ll do it and the time really flies once you are in it. You got this, Steve! Best
Phil

@retiredguy
Good information. I found the reading of numbers confusing coming from so many posters. I have learned that different labs, different machines, different distinct levels of testing and thus vastly different numbers are possible and used by labs.

For me I go to Mayo Jacksonville. My PCP in discussion on my last PSA test of .22 stated to me that Mayo Jacksonville lab does not give numbers below .1. Not .01.
He said below .1 that our lab considers that non detectable.

I see many posters posting much lower numbers of PSA than .1 that indicates many labs have different levels of tests and abilities when posting PSA numbers. I would have thought Mayo Jacksonville would have a more sensitive machine and testing. Maybe they do have a special machine when requested by doctors but have no information on this.

My R/O at UFHPTI said goal for me was a PSA below One (1.0) not .1
I have reached that already with my .22. But I did not have prostate removal or any hormone treatments. When I read others very low PSA numbers, I do not question them as obviously their labs are using different machines and /or sensitivity numbers than mine.

A prostate cancer patient's urologist, surgeon, R/O would have specific goal numbers depending on if they had surgery, hormone treatments, type, and duration of radiation treatments, etc.

For me decades ago my PSA was .75. It was that level for many many years and then in 2018 started rising. Both my PCP and I thought it was from extensive bike riding as I did Sprint Triathlons. So, we stopped riding the bike over and over prior to testing but kept rising.

I was .63 4 months post surgery, pet scan showing small amount of cancer still near my lymph node , not good , it’s too late now but as I read various comments I’m confused about the decision I made since I too am not ready to “play House” I had one of the top Doctors at Mass General in Boston who does not use robotics. When we discussed options, he mentioned if I started with hormone and radiation first , there was a chance surgery could not be done later , did I misunderstand his comment? So I had the surgery and didn’t get it all so another 8 weeks of feeling down and can’t help wondering if I made the wrong decision. Very difficult for me despite pumps and pills that haven’t worked yet and now with Hormone shots has anyone been able to have any success with an erection during this additional treatment. I use to look, feel, and act 10 yrs younger than I am , hope to feel that way again 🙏