PSMA scan: Undetectable PSA and fairly... - Advanced Prostate...

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PSMA scan

Survivor1965 profile image
39 Replies

Undetectable PSA and fairly clean bone scans and CT’s. Still my Onc at Mayo has me doing a PSMA on Wednesday.

Thoughts?

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Survivor1965
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39 Replies
6357axbz profile image
6357axbz

From all I’ve heard and read a PSMA scan is a waste unless your PSA is north of 0.5.

slpdvmmd profile image
slpdvmmd in reply to6357axbz

My personal experience was that at almost exactly 0.5 is was positive and subsequently helped direct therapy. There are few absolutes in medicine and I think the learning curve, particularly in the US, has a long way to go with PSMA scans as well as radioligand therapy.

Justfor_ profile image
Justfor_

Slim as it may be, there is always a possibility that something will be detected. In the case nothing is detected you have got a baseline imaging for future comparesions. A win-win situation in my view.

Survivor1965 profile image
Survivor1965 in reply toJustfor_

Thank you! This gives me some good reasoning. I like the baseline imaging thought.

6357axbz profile image
6357axbz in reply toJustfor_

If Pylarify is not capable of detecting anything with PSA <0.1 how can that scan be useful as a baseline?

Justfor_ profile image
Justfor_ in reply to6357axbz

Who told you that it can not detect "anything" with PSA less than 0.1? Some silly doc that confuses low probability with non-existence?

Tall_Allen profile image
Tall_Allen

Pretty useless.

I did one when psa was .6 and it found nothing. I did another one at 1.8 and found many LN involvement.

londoncyclist48 profile image
londoncyclist48

Different scan but I'm having an MRI on April 30th to check what I look like "clean". My PSA has fallen from 10.79 to 0.06. The doctors have previously mentioned extensive lymph node involvement and spread to the bones.

Survivor1965 profile image
Survivor1965 in reply tolondoncyclist48

winning!

maley2711 profile image
maley2711

Suggest you ask "why" when PSA below 0.5 that scan detects little.

MateoBeach profile image
MateoBeach in reply tomaley2711

Trial at UCLA used a cutoff of 0.25. My first PSMA scan in 2019 at a PSA of 0.2 found two pelvic LNs I had treated with SBRT. Follow up PSMA a month ago at PSA of 0.14 found two others we are now treating (SBRT followed by Lu-PSMA-J591). NOT useless! 0.5 PSA as cutoff is obsolete.

London441 profile image
London441

I’m sure he has his reasons, but the best logic I’ve ever heard on the subject is ‘don’t look for something that if found won’t change your treatment’.

To this end, the question in your case seems to be whether your MO is planning to zap (spot radiate) whatever might be found. You’re already on a drug combo that is working great, so what else is there? Personally I’d not be into foraging with a undetectable PSA in your situation, but you may think differently.

Blackpatch profile image
Blackpatch

PSMA PET has been widely available in Australia for around 6 years and is not very expensive if ordered by a medical practitioner - your out of pocket cost would be about $US 300, and that would be picked up by your insurer if you had decent coverage.

With that as background - my MO and RO, both researchers at Peter Mac, Australia’s premier cancer research institute, ordered a scan before eSRT at PSA = 0.12, and then another a year later when AADT finished and PSA was undetectable.

Their explanation was that it’s worth being sure that there are no localised PCa accumulations that may be able to be imaged, despite the low PSA.

The bottom line is that once the technology is widely available at moderate cost, it seems to get a fair bit of use - the associated radiation dose is judged to be justified despite the low probability of detecting anything.

Not sure if this helps you - clearly the US is at a different stage of PSMA PET evolution. But it may help you see past cost factors.

Not sure who your Dr is, but if its Dr Kwon Mayo Rochester, I would take the scan, he is not a for profit Dr. quite the opposite he's a scientist and truly cares about each patient's outcomes. Just sayin from experience, he's Brilliant and always on the leading edge .If he's not your Dr. Then make an appointment ASAP you can thank me later ;)

Good Luck and stay healthy.. Diagnosed in 2010 , Fighting this beast for 12 years .

Kittenlover50 profile image
Kittenlover50 in reply toTheWizardofWesley

I was just going to write about the same thing. On the road 8 years..

TheWizardofWesley profile image
TheWizardofWesley in reply toKittenlover50

Stay Healthy and Best of Luck in your journey

Survivor1965 profile image
Survivor1965 in reply toTheWizardofWesley

I saw Kwon from 2014-2018, he saved my life. We moved to PHx now seeing Bryce. Cant say enough good about Euge.

TJGuy profile image
TJGuy in reply toTheWizardofWesley

Yes all doctors at MAYO I would expect all MAYOs but don't know that. But at MAYO Rochester MN are on salary, they are not getting paid more for each procedure they prescribe.

TheWizardofWesley profile image
TheWizardofWesley in reply toTJGuy

It's not the Dr's I'm referring to, it's the management of the hospitals, the more procedures THEY do the money in their coffers. 🤔

Azores1 profile image
Azores1 in reply toTheWizardofWesley

I have the same story. Eugene is a great doctor and a friend. I wish all physicians were like him.

TheWizardofWesley profile image
TheWizardofWesley in reply toAzores1

I can't begin to express the love, respect and how we felt after our first visit with Eugene Kwon..it was like a ton of bricks were lifted off of our chests. Cant wait to see him come June.

Bodysculpture profile image
Bodysculpture

They ate being thorough

StePeteMN profile image
StePeteMN

Not necessarily a waste. PSA and cancer volume are not always directly correlated.

TEBozo profile image
TEBozo

Do it. It will show cancer cells previously undetectable. Mine was 0.47

slpdvmmd profile image
slpdvmmd

You need to define undetectable please. At Mayo my impression is that the standard test is to 0.1 and read out as undetectable if not detected at or above this level. So to see value below this would need ultrasensitive test. Also as I commented below my personal experience was my PSMA scan was positive at 0.5 and helped direct therapy.

Survivor1965 profile image
Survivor1965 in reply toslpdvmmd

Less than .1. And you’re right not necessarily undetectable I guess

TJGuy profile image
TJGuy

Mayo performs the Choline or PSMA scan at very low PSA for this reason.

A percentage of Mayo PC patients about 5 to 8 percent have PC that progresses regardless that their PSA is not increasing.

So this scan that is being prescribed is to determine if you fall unto that percentage of patients.

So it's not to find PC if your not in that group, only if your in that group.

If you were in that group your actual PC could be progressing and your thinking your fine because nothing is happening with your PSA.

They are basing treatment around the PC not the PSA in this case.

maley2711 profile image
maley2711 in reply toTJGuy

yes, reminds us all that not all PCa cells are high volume PSA producers!!! some of us might need to remind our Docs of that??? I think we are out of the SOC guidance area?

DMohr011 profile image
DMohr011 in reply toTJGuy

My PSA was 1.2 at diagnosis with Gleason 9-10. Can testify some PC cancers don't report much PSA.

StePeteMN profile image
StePeteMN

Well said. I seem to be in that 5 to 8 club. My PSA is tiny, yet C11 and PSMA scans (they nearly matched but in case the C11 showed slightly more cancer than the PSMA) reveal cancer that's out of proportion to what my PSA suggests. At Mayo they're vigilant about this.

Survivor1965 profile image
Survivor1965

Thank you gentlemen.

j-o-h-n profile image
j-o-h-n

Doctor's mortgage payment is due....

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 04/05/2022 10:48 PM DST

DMohr011 profile image
DMohr011

I just had my first PSMA scan done this last Friday, and I was glad the doc recommended it. My last MRI in September showed my cancer undetectable, and PSA <.10 . He figured if this scan cames out clear, then I'm in the clear and go off everything. And results show I'm in the clear!

What a coincidence too, we use the same Doc - Bryce.!

Best to you!

Dave

Purple-Bike profile image
Purple-Bike

Is increase of LDH and bone-ALP likely for those 5 to 8 percent with PC that progresses without psa increase?

in reply toPurple-Bike

That's what I would think. If they are significant rises. along with possibly, AST and ALT, and fibrinogen. Perhaps Chromagranin-A

Purple-Bike profile image
Purple-Bike in reply to

Thanks.Why would AST and ALT tend to go up?

6357axbz profile image
6357axbz

So what did your scan show? Was it the Pylarify scan?Thanks

Survivor1965 profile image
Survivor1965 in reply to6357axbz

Scan lit up a few lymph nodes in groin and armpit. Also a mass in my breast, which was the only thing they really concerned about. Had a mamogram, called it a man o gram, doc Im growing some breast tissue. Dodging lots of bullets over here and damn happy about it.

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