Unusual case

[npac]

Short summary. 79 years old. Surgery 12 years ago on G4+3. Recurrence 3 years later. IMRT and second recurrence 3 years later. No ADT. PSADT 1.5 years and now it's 2.3.

Two PSMA scans. First showed nothing. Second showed ill defined area in prostate bed that might be positive.

Never had ADT. Johns Hopkins advises wait for it to get to 10 before considering ADT. I've read that some prostate cancers just hang around and do nothing, never metastasize. Maybe I'm in that category.

Anyone else close to this?

[Teddy28]

I had a similar situation, with doubling time of 15 months and was advised by 2 doctors (Mt Sinai and Sloan Kettering) that I could safely wait until PSA 10 or even 20, as long as DT stayed slow. A PSMA scan finally showed lung nodules that were deemed to be prostate cancer related, and I decided to pull the ADT trigger at PSA 5. After 12 months ADT (Lupron and Xtandi), PSA stayed undetectable for 15 months, and now is slowly rising.. Will likely wait until PSA 5 or maybe 10 this time.

[j-o-h-n in reply to Teddy28]

Keytruda for your Lung nodules? Ask at MSKcc.

Good Luck, Good Health and Good Humor.

j-o-h-n

[Teddy28 in reply to j-o-h-n]

JOHN - My lung nodules are assumed to be prostate cancer since hormone therapy shrank them. Very small and not possible to biopsy. I read Keytruda failed to add a benefit for prostate cancer relative to other treatments so I am wondering what your thinking was on suggesting it. Thanks

[j-o-h-n in reply to Teddy28]

Well I guess I'm talking my apples instead of your oranges. I had lung nodules from a melanoma on my neck which metastasided (spelling) to my Lungs. The nodules were treated with Keytruda at MSKcc and it worked. I thought by asking your M.O. you may be a candidate for treatment. Anyway Stay well.

Good Luck, Good Health and Good Humor.

j-o-h-n

[Teddy28 in reply to j-o-h-n]

John thanks for explaining your rationale and taking the time to do so.

[j-o-h-n in reply to Teddy28]

You're welcome but that's why we are here...........(after my humor that is)....

Good Luck, Good Health and Good Humor.

j-o-h-n

[npac in reply to Teddy28]

Teddy thanks for your reply, and sorry that they found lung nodules. Your story is even more unusual than mine. I'm beginning to think most prostate cancer progresses in very individual ways.

A couple of questions. You started ADT at 5. Does that mean the lung nodules were identified by PSMA at that low of a PSA level?

Also, you say you will wait until PSA of 5 or 10 this time. Do you mean you will get another PSMA at that level, or that you were on intermittent ADT and will restart it at that level?

[Teddy28 in reply to npac]

NPAC - My lung nodules were identified around PSA 2 via PSMA but were not seen as prostate cancer as they were small, and not very avid (low uptake of the radioactive tracer molecule). In hindsight, there were some nodules, very tiny, seen at PSA as low as around 0.5, but again, too small at the time for definitive assessment. When PSA hit 5, and lung nodules were very avid in a Pylarify PSMA scan, they were presumed to be prostate cancer but could not be biopsied because of their location. ADT shrank them and they were not visible on a CT scan. From what I know, a PSA of around 2 is needed to see prostate cancer but there are cases where you might have one very avid lymph node or other lesion and a lower PSA might still show something in a PSMA scan. In my case I will wait until at least 5 or 10 or maybe even a bit higher PSA, dependent upon keeping a slow 1 year doubling time before starting ADT. If my DT shortens appreciably then I will start ADT sooner and will get another scan before treatment. Let me know if I have not fully addressed your question. Teddy

[NanoMRI]

'Never' is a long time to not metastasize but I can understand reasons why your doc's suggest you hold off on ADT. I am just 67 so doing all I can to get to 79 without need for ADT.

After my RP, G 4+3, and salvage RT, at PSA 0.11 my cancer had made it to six pelvic nodes including para-aortic - confirmed by ePLND surgery biopsy; that was over six years ago. Those cancerous nodes did not show up on PSMA imaging - this beast can be elusive.

My PSA is holding 0.03X range no ADT. Awaiting results on this years PSMA and blood biopsy - doing all I can to not give this beast time and obscurity.

[vintage42 in reply to NanoMRI]

"... am just 67 so doing all I can to get to 79 without need for ADT... After my RP, G 4+3, and salvage RT... my cancer had made it to six pelvic nodes... doing all I can to not give this beast time and obscurity."

I think doing all should include ADT. With those metastases, undetectable cancer cells are likely throughout your body and would be suppressed by systemic therapy. I avoided ADT for three years which allowed my cancer to metastasize. I finally started ADT six months ago, and find that Orgovyx and Abiraterone are not unpleasant.

[NanoMRI in reply to vintage42]

Seems to me risks are present whether we treat or not, and how we treat. Until I get some evidence of progressing disease, my strategy is to continue holding off ADT and carry on with bimonthly PSA testing, annual biomarker testing with GUARDANT360 CDx blood biopsy and annual imaging. The moment this beast shows its head I will be on it. I am striving to achieve longest period possible of treatment free survival. Over five years so far.

Additionally, we hear some much on over treatment with RP (I had RP not RP over treatment). Seems to me there are reasons to be concerned for over treatment with ADT.

All the best to all of us fighting this beast!

[npac in reply to vintage42]

"I avoided ADT for three years which allowed my cancer to metastasize. I finally started ADT six months ago, and find that Orgovyx and Abiraterone are not unpleasant."

That's the big decision. If done too soon QoL suffers and the PC can become resistant sooner. If done too late metastasis happens and it's harder to treat.

[npac in reply to NanoMRI]

Yes, "Never" is a dangerous term to use. I was quoting from a paper that found many men who died from something else before metastasis, so it's "never" in that sense.

You're doing very well for having had six positive nodes. Keep up whatever you're doing.

I do have the "advantage" of being old lol. I was diagnosed at 63 so I did all I could to slow down progress. Surgery and radiation were first of course. After those two failed I followed the diet recommended by Dr Snuffy Meyers. He was using PSMA and radiation for oligometastatic cancer in his private practice when many others thought he was a kook, and now it's become pretty standard.

Snuffy favored a Mediterranean diet and certain supplements. Today I still use POMI-T and Modified Fruit Pectin as supplements, ordered from Amazon. They have both been shown in clinical studies to slow down PSA progression. Did they help me? I don't know but I've gotten to 79 with a PSA of 2.3 and a DT of 18 months that hasn't metastasized. I might be in the same place without supplements but I'm going to keep taking them.

[Tall_Allen]

It is likely that the low uptake in your prostate bed is a false positive.

[npac in reply to Tall_Allen]

Yes that's quite possible. My RO said it was an ill defined region , and nothing showed anywhere else. And, having had prostate bed radiation, that has to be one tough cookie if it came back there.

[Tall_Allen in reply to npac]

It's more than possible for a more important reason: the radiotracer is excreted quickly by the kidneys. That means that it is often seen in and around the prostate. A new radiotracer, Posluma, is very slowly excreted, so false positives in the excretion zone are lower.

[npac in reply to Tall_Allen]

Interesting. Thanks. If it's a false positive with a 2.3 PSA I likely have PSMA negative PC. I read that 10% of PC is PSMA negative especially in recurrent cases. Not sure if that's good or bad. But I did read that PSMA expression level in tumors has been negatively correlated with survival outcomes.

[fourputt]

I am 74 (PSA 4+3 = 7) and had my RP 12 years ago also. Had SRT w/no ADT in 2018 and am now monitoring a slow PSA rise (10 month DT) and am currently at .85 . PSMA scan at .4 negative. Next scan planned somewhere between PSA 1 and 2 depending on velocity/DT. My hope is to catch it in a oligometastatic stage and play "whack a mole" as long as I can but who knows. I am all for putting off ADT at my age as long as I can.

IMO, cases like ours are where AI will be a huge help in making decisions at some point in the future but we're not quite there yet.

[npac in reply to fourputt]

You're following the same strategy I followed. At 79 my game plan is to delay the game.

I figure of it comes back as oligometastatic in 2 years that can be radiated that should give me a minimum of 2 more years. Maybe 4 if I can play whack a mole twice. If I do ADT that's another 2 years before it becomes resistant then another 2 years with secondary treatment. That adds up to 8 or 10 years and gets me to 87 or 89 and, as my doctors all say, I'll probably die of something else. Since my life warranty expired 5 years ago I'm just living on borrowed time anyway.

[fourputt in reply to npac]

LOL Yep I call it trying to run out the clock .