New Oncologist recommending Pylarify ... - Advanced Prostate...

Advanced Prostate Cancer

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New Oncologist recommending Pylarify PET scan. Good idea or not?

ReMarcAble profile image
27 Replies

My PSA has been undetectable for 2 and 1/2 years. My Oncologist abruptly left Florida Cancer Specialists. The new Oncologist is suggesting a Pylarify PET scan for PSMA. My last Axumin scan in 2020 showed PC in multiple lower abdominal and bilateral pelvic lymph nodes and prostate.

Is this scan a good idea for me at this point? Am I correct to believe that since I'm undetectable it's not going to tell us much if anything. I don't want to get all radioactive for no reason! HELP scheduled for this Tuesday!

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ReMarcAble profile image
ReMarcAble
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27 Replies
6357axbz profile image
6357axbz

My MO who seems to be highly regarded nationally had me get a Pylarify scan even though my PSA is undetectable. She said AC he wanted it for a baseline by which to compare subsequent scans.

I don’t believe the extra radiation is an issue.

Tall_Allen profile image
Tall_Allen

I agree with you - there is no point unless your PSA reaches 0.5 or starts increasing rapidly. Even then, the conversation should be - what will we do about it if it shows something?

Chadsdad profile image
Chadsdad in reply toTall_Allen

TA, I have been 0 PSA for 3 years on Eligard and Erleada. I’ve read about pca growing with (low) psa’s after long term use of adt. Do you think this can happen with an undetectable PSA and would you recommend a yearly CT/Bone scan to provide some insight to anything going on? Thank you for the time you spend providing answers for us.

Tall_Allen profile image
Tall_Allen in reply toChadsdad

what was your PSA before adt?

Chadsdad profile image
Chadsdad in reply toTall_Allen

22.3 prior to RP and prostate bed radiation. Bounced around for 2 years from .5 to .9 and then a quick rise to 5.6. Axumin scan found 3 active lymph nodes. That’s when I started Eligard and Erleada. Last 3 CT and bone scans showed NED.

Tall_Allen profile image
Tall_Allen in reply toChadsdad

That is a normal high PSA type of PCa that responds well to hormone therapy. IMO, I don't think that scans are useful for him right now. Just take the win on the PSA 😀

GP24 profile image
GP24

If you get Lupron and Xtandi, a PSMA scan could show lesions even at low PSA levels. However, I would ask the oncologist what change to the treatment he plans based on the results of the PSMA scan. It could be radiation of the detected lesions.

"I don't want to get all radioactive for no reason! " I had ten PSMA scans now and have no side effects from these.

Benkaymel profile image
Benkaymel in reply toGP24

I am on Prostap & Xtandi, PSA=0.2 and had a PSMA-PET scan for that very reason of identifying tumours that may be worth radiating. However it's just the symptomatic ones that will be zapped along with the prostate itself which still has a large tumour.

Nfler profile image
Nfler

I would recommend it as it’s so much more advanced than the aux. It can detect pca with a psa of .20 at about 92% accuracy n can give a jump on any new pca that may be developing n need radiation. I’ve had 2 aux n2 Psma no side effects as it’s reported to leave your system within 19 hours and it will give you the most accurate reading for a baseline, imo

dhccpa profile image
dhccpa in reply toNfler

92% accuracy at 0.2 would be very good. I didn't realize it was that high at such a low PSA. You didn't mean a PSA of 2.0?

Nfler profile image
Nfler in reply todhccpa

Pardon me I misquoted meant to say at 2.0 psa And I think it’s in the neighborhood of 30-40% @ .20, but still worth doing imo…

dhccpa profile image
dhccpa in reply toNfler

Thanks

StayingOptimistic profile image
StayingOptimistic in reply toNfler

are you sure about the 90% detection rate at .2 psa? I have heard it’s only 40-50% at .2

Nfler profile image
Nfler in reply toStayingOptimistic

Pardon me I misquoted meant to say at 2.0 psa And I think it’s in the neighborhood of 30-40% @ .20…

NJWarrior profile image
NJWarrior in reply toNfler

It's closer to 30-40% at 0.20 PSA. Still worth doing though.

Justfor_ profile image
Justfor_

From a quantification I tried in the past, in accordance with a Canadian occupational hazards directive, the radiation dose one receives from the scan is equivalent to 5 transAtlantic air travels.

addicted2cycling profile image
addicted2cycling

From Bio -- " ... PSA dropping to <.01 by 10/20/2020 and has remained undetectable to PRESENT DATE 3/3/23. "

I'd take a CHILL PILL and enjoy life until PSA doubling time red flags the situation.

StayingOptimistic profile image
StayingOptimistic in reply toaddicted2cycling

what is your PSA doubling time red flag?

addicted2cycling profile image
addicted2cycling in reply toStayingOptimistic

info r.e. PSADT ---

verywellhealth.com/doubling...

from above ^^^

PSADT

The PSA doubling time has a big influence on treatment. There are treatments for men whose prostate cancer had recurred and is getting worse despite anti-hormonal treatment with Lupron Depot.

Treatments for recurrence of prostate cancer that hasn't spread:

PSADT of 10+ months: Observation is generally preferred. Secondary hormone therapy can be considered.

PSADT of three to 10 months: Treatment with Erleada (apalutamide), Nubeqa (darolutamide), or Xtandi (enzalutamide) is preferred. Additional secondary hormone therapy is also recommended.

PSADT of three months or less: Treatment should be aggressive, such as six cycles of Taxotere (docetaxel) along with Lupron Depot.5 Some medical providers may consider new drugs like Zytiga (abiraterone acetate), Xtandi, or Orgovyx (relugolix).

note : info was -- By Mark Scholz, MD Updated on July 25, 2022

Fightinghard profile image
Fightinghard

i agree with you. At this very low PSA the scan is not likely to provide much actionable information. Count yourself lucky that PSA is staying very low and enjoy your life.

Seebs9 profile image
Seebs9

Auxumin did not see spots on my liver PYL did. Be prepared to be upgraded in a negative way.

StayingOptimistic profile image
StayingOptimistic in reply toSeebs9

how are you doing now? No update on your profile since 2019. Thanks

Seebs9 profile image
Seebs9 in reply toStayingOptimistic

Xtandi and relugolix, total penectomy about 2+ months ago. The girls no longer fear me...I have my left kidneys ureter being strangled so I'm going in very soon for either a Stent but they tell me they want to do the tube and bag out the side. Already have a suprapubic catheter so I can actually stand up to pee. I have 30 minutes of energy before I have to lay down to recharge. Was really counting on the plavicto as I don't have any interest in chemo. Other than that I do have enough energy to comment on J-O-H-N's wise alec posts...I will update my profile soon. Love ya brodda!

Cooolone profile image
Cooolone

The problem, is if you talk to a qualified MO who is experienced with metastatic disease, they will tell you that they don't "treat" PSA. Chasing it is a bad idea as well.

There's nothing wrong with taking a "look"... Nothing to lose either except the time doing the test. As a matter of fact, I believe once mets are detected, yearly scanning is expected. CT and Bone scan for the purpose of pre-emptive action at the very least. In other words, why wait until the disease rears its ugly head and PSA is doubling like a rocket to act? Are you on a yearly, 6 month, or 3 month testing regimen? Arrrrrgh... A potAto or pOtaato... But really, not everyone differentiates PSA, not every patient responds the same. We are all different...

The conundrum of our journey! Lol

But if the Doc wants to do some extra peeking around, what really is the drawback? No PSA, and then nothing or no evidence on scans is a comfort many of us would enjoy!

Best Regards

ReMarcAble profile image
ReMarcAble in reply toCooolone

thanks I haven’t had a scan since July 2020.

katbel57 profile image
katbel57

My husband has had 2 Pylarify scans within a year, and although I know that he is not currently radio active I also worry about too much radiation. You should absolutely have it done, it is one of the most definitive tests to know for sure where the cancer is and if it is growing, even if your PSA is low. It's better than Axiom and will give you a baseline for future medical decisions. Hope all goes well.

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

Radiation? Shoot I've gotten enough of that to run my electric car around the world twice, and with the radio playing Hip Hop music.....

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 03/04/2023 11:34 PM EST

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