Important Message regarding my Previo... - Advanced Prostate...

Advanced Prostate Cancer

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Important Message regarding my Previous Post on a Positive Psma test Dealite a .01 PSA. MISTAKE

Schwah profile image
13 Replies

Wow. Here’s one for record books. I made an appointment at ucla to discuss my options after a positive reading of my psma scan despite .01 PSA (see previous post on same). Then just a few minutes ago the radiologist from ucla called me. Oops. It was all a mistake. It was “urine on my prostate” and “the other spot was too faint to call cancer” so they call it “non specific” to be checked in 6 months. I asked what prompted him to re look at it and he said my Dr kishan at UCLA questioned him about a positive with such a low PSA.. He says two other radiologists there now have looked at it and all agree with his new reading. He was quite apologetic and obviously embarrassed. Of course I got the bad news on the way to the airport for a family vacation and the good news today in the airport on the way home. 🙈. Sorry for any consternation I caused for the other undetectables out there. Another great lesson to always question your drs and your test results. Mistakes do happen.

Schwah

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Schwah
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13 Replies
Tall_Allen profile image
Tall_Allen

Most of the conventional PSMA ligands are excreted through the kidneys, bladder, and urethra, so SUVmax comparison to background is particularly important anywhere touching those organs. (Some newer ligands are excreted from the GI tract). PSMA also has affinity for neovasculature, so blood background is important. This is part of the reason why PSMA-based PETs have to go through clinical trials and are not FDA approved yet - there is a learning process that has to occur. The receiver operating characteristics (ROC) has to be understood because every diagnostic test has false positives and false negatives at different cut-offs.

mcp1941 profile image
mcp1941 in reply toTall_Allen

It seems like PSMA scans are routine in Australia and western europe. If those countries have learned how to interpret scans why can't the USA learn from them and get on with it and approve PSMA scans.

Sounds like to me the psa was lower than the test could detect correctly as the guys in other countries that do it all the time said. Did they give your money back?

Schwah profile image
Schwah in reply to

Uhhhhhh I don’t think sooooo. Lol.

tango65 profile image
tango65

I was surprised that it could detect anything with a PSA of 0.01. They have to compare the SUV of the possible lesions with the bone marrow and what they call the blood pool background and sometimes the liver background. It takes time for the radiologist to learn how to interpret these studies.

timotur profile image
timotur

When I had PSMA test at UCLA in February, one LN was seen right at the detection threshold of 3.5 SUV, and my MO thought it was a false-positive, considering it was a pre-sacral LN, which has only 1.5% occurrence rate relative to other LN’s. The main tumor reading was around 100 SUV, and could have contributed to a spurious reading. Most likely your readings were near the threshold and thought to be false-positives.

NPfisherman profile image
NPfisherman

Schwah,

I'm gonna have your wife spank you with the uproar you created in discussions with several members.... LOL....

All good brother....several of us just took a sigh of relief....

They have developed a new scan using fibrinogen activation protein, which not being based on PSMA, could potentially detect tumors when the PSA is "undetectable"....We have had some great scientific news in the last 2 weeks...

In the meantime, enjoy the ADT vacation... LIve Life LARGE !!!!

All the best,

Fisg

Schwah profile image
Schwah in reply toNPfisherman

Amazing they could be that wrong. At a major institution. So sorry to raise such a big storm. 🙈

Schwah

in reply toSchwah

I’m just happy it isn’t cancer.

Big_Mcc profile image
Big_Mcc

My psa is 0.03 and was going to book a psma scan but I read that its not recommended for psa less then 0.4, standard value adopted by Germany. Am I wrong?

Schwah profile image
Schwah

Yesterday when my results were positive from a psma scan despite .01 PSA, I might of said you were wrong and the test could be useful. Today after UCLA corrected their report to say no cancer shown, I’d say you are right. No point in the test until your PSA rises.

Schwah

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

"He was quite apologetic and obviously embarrassed." Thanks Doc for ruining my family vacation, whatcha going to ruin next? My surprise birthday party? REFUND!!! (Good news anyway)

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 06/21/2019 11:33 AM DST

jdm3 profile image
jdm3

Just read this after being out of WiFi connectivity for a couple days (fishing in the north woods of Maine).

Happy for you brother! That's good news! Take a deep breath.

A lot of angst, confusion, and worry caused by that radiologist.

Have a good weekend!

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