I just started a “vacation” two weeks ago from Zytega and lupron after 21 months and .01 to .02 PSA for a year now. Since I have 60% of a prostate (partial chryo 8 years ago) indicating my PSA will rise even without cancer, I wanted a baseline psma tests comparison against future psma tests as a way to monitor my disease. My dr (Scholz) and the radiologist administering the test at Ucla both said it was highly unlikely they’d find anything so no real need to even take the test other than as a baseline for future tests. Well... test came back today showing two small spots. One in my lymph node near my stomach and one in the prostate. As Tall Allan warned, chryo can fail to get the cancer and lo and behold the spot is right where I had the chryo 8 years ago. How on earth could two spots turn up when my last PSA was .01? Is it that sensitive? Could it be a false positive? Seems unlikely given the accuracy of the test ? What now. Off the vacation? Try something new? Zap the spots with radiation ? I guess that vacation was short lived. Darn.
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Thank you for posting. Can you tell me how long your PSA has been this low? I have my own concerns although I am "undetectable" in the eyes of Cleveland Clinic....Maybe not as "undetectable" as I should believe....Wow.... Sorry for your news, brother but look at George 71 post on radiation--maybe that could finish the deal...Wishing you the best....
Thanks for your reply....You answered your question from a year ago and there was no met in your hip where the pain was then...This disease is insidious .....Could you please tell me what type of scan were your mets found with initially???... I had an axumin scan with a PSA of 3 that found my met, but we now know the axumin is around 82 or 86% accuracy...(can't remember)....
I guess what I would do in your situation is zap the mets with SBRT....or do Tookad perhaps for the prostate lesion which should be a finisher and zap the other one....I am thinking about looking into the laser treatment at University of Arkansas for CTC's... (another idea)....I wish you the best, my brother...
Your news saddens me...my heart is heavy with your news...prayers...... Fight on !!!!!
Thx for the kind words Don. It feels like a blow to the guy. But I’m only down for 8 seconds and back up fighting. But don’t be sad for me Brutha. I actually consider myself very lucky with a still undetectable PSA (which never even doubled so no PSADT). And I’m apparently still hormone sensitive after two years. I never had any pain from my two pelvis mets as they were very small. They were spotted with a C-11 acetate scan in Phoenix two years ago with Dr. Almeida. That too was an experimental state of the art (at the time) scan that has become obsolete with the strength of the psma scans.
I am better now....I knew you were a fighter as are we all...I guess the question that comes to mind is whether these other lesions were there and not picked up by the C-11...
Apologies.....Tookad is only being used in low risk prostate disease and works on 1 side....see below:
Hit it hard and hit it now!! The laser treatment George posted on could also be a part of your answer depending on when Clinical trials are started on this device...
Cited from this study: "31 PC lesions were visible in all ten patients before initiation of ADT. However, during ongoing ADT (duration 42-369 days, median 230 days), only 14 lesions were visible in eight of the ten patients"
I had a PSMA PET/MRI about six months after starting ADT and it showed the same mets as before starting ADT. The PSA value was 0.09 ng/ml when that was done. You also have to look at your PSA value before starting ADT to estimate the PSMA expression.
What to do now? The recurrence in the prostate could be zapped with Cyberknife, not sure about the other lymph node. Or just continue with your break of Zytiga/ADT and start again, when the PSA value rises to the level you have planned to restart at. These little lesions are not very dangerous.
I just saw my MO last week three months into ADT vacation. I asked about the scans and his response is that they can be clinically insignificant at low PSA. In other words, they may show something that is not actionable. His preference is just to monitor PSA and PSADT. He said even that can fluctuate so we need to be circumspect about when to do something, if anything.
I know this is different from what your doctors say, but perhaps you should monitor PSA for a few months and if you have additional concerns, get another scan in 3 to 6 months.
Yea that’s the problem with these tests. What actions to take based upon the results...I will probably zap the two spots for now and continue my vacation. Shocking to me (and my MO and the radiologist ) that something showed up at such a low PSA.
Shocking to me too! And discouraging especially after you went after it so aggressively with chemo, Z + P, etc... Still hard to believe they were detected at a PSA of 0.01. Maybe it is a false positive. Maybe they are relatively benign. But since you don't know, they can't be ignored.
On the bright side... it sounds like the original mets are completely gone and PSA is still undetectable. If these two spots are indeed PCa, you are getting them very early on. They don't stand a chance once you zap them.
Hoping your PSA stays undetectable and your scans are clean from now on.
Nalakrats--very much hope you do get out your magnus opus on killing dormant cancer cells--it would be a great topper to your amazing series of informative posts.
Thanks for the reply, Nalakrats. So attempting to think logically, if the tumor is not removed or cannot be removed, then the ADT will have limited success. Is that theoretically correct?
I wonder how many other PSMA PETs your medical team has done on undetectable guys in your situation and what the results were. Did they talk about that? It sounds like your "spots" were a complete surprise to everybody. Most of what I've read suggests these scans, as sensitive and specific as they are, normally are not recommended until PSA is greater than 0.5.
Yours correct Josh. The radiologist spoke to me before the test and said “no need to do it since your PSA is so low but if you can afford it would be nice to have a baseline.” My MO says the same. I have a call into the radiologist to ask specifically how often this happens. I guessing not a lot of .01s take the test.
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