What should I do next?

[Squirrel71]

Hi to all.

Reading your posts is both informative and entertaining with a touch of sadness. It really is a journey to be a member of this club ( which no one wants to join and which takes a heavy toll on our caregivers as well). Some of you are extremely generous with your time and knowledge and I admire you for that. I am unfortunately more of an observer than a contributor but I cheer you on quietly.

This is my dilemma. I was diagnosed a year ago with a PSA of 171 and a Gleason score of 7 (4+3). I started Casodex immediately, replaced that with 4 month Lupron injections a month later and added Apalutamide a month later. The combination worked well and brought my PSA down to 0.014. My CT scan did not indicate that I was metastatic. I underwent a PSMA/PET scan which located positive lymph node involvement in the mesorectal space, the obturator fossa, right external iliac lymph and right common iliac lymph nodes. Due to the mesorectal nodes, surgery was refused. Due to my anatomy, radiation to the lymph nodes was said to be too risky. In December, I had 36 GY (6 X6Gy) GY treatment to my prostate and my PSA is now at 0.013. I recently had a scan to determine if I might qualify for a SABR-COMET10 trial for treatment of my lymph nodes but the CT scans were negative.

Should I assume they are negative because of the lack of sensitivity of the CT scan?

I believe I am oligometastatic and that there must be something I can do to proactively pursue the cancerous cells other than putting them to sleep with ADT?

Do any of you have and thoughts on what I should/can do next?

Thanks and best regards

Joseph (aka Squirrel 71)

[Tall_Allen]

There is no evidence that metastasis-directed therapy accomplishes anything. You ARE proactively pursuing the cancerous cells that are everywhere throughout your body. The intensive hormonal therapy certainly is killing many of those cancer cells that are too small to detect with any kind of imaging. It won't kill all of them, nothing we have so far will. But it will reduce their population to the point where you survive much longer. It helps to think of metastatic prostate cancer as a disease one manages and lives with (like HIV) rather than a disease one cures.

BTW, the earlier SABR-COMET Phase 2 trial was deeply flawed, as Palma is aware:

prostatecancer.news/2019/04...

[pete-ginger in reply to Tall_Allen]

Allen - Would you post a research article link for your first sentence? Many thanks. mike

[Tall_Allen in reply to pete-ginger]

How can I post what I am saying does not exist?

[pete-ginger in reply to Tall_Allen]

must be a scientific basis for “no evidence.” yes? yes?

[Tall_Allen in reply to pete-ginger]

There would have to be evidence for evidence to exist. There is none.

[pete-ginger in reply to Tall_Allen]

Hey. I don’t mean to push, just discuss, plus this stuff kinda makes me perversely hot. Thank gods and goddesses something still does. Anyway, if a lack of evidence is to be scientific, such a conclusion must be based on scientific data, analyses, findings. Otherwise, someone could hold up an empty bucket and say, “See? No evidence.” Just as someone else walked in the door with a steaming plate of never-before-known-or-even-suspected evidence. [Good example: Hubble’s discovering in the 1920s that the universe and its gazillions of galaxies were expanding - and still are - when, correct me, I don’t think anyone had ever before seen specific objects far out into our own galaxy, not to mention outside the Milky Way to other galaxies, despite Dr Einstein’s “relativity.” A lot of scientists thought Hubble was crazy...until he presented his indisputable evidence.] In the former case of the empty bucket, unsubstantiated belief or opinion - or lack of or incomplete or inexpert research - would rule the day. Or even kowtow to academic fraud - that happens more often than many of us would like to believe. [This kind of research inquiry gets into the whole H-naught method of inferential statistics - sadistics, some call it. Allen, I was just hoping you might point me to a good study with valid and reliable findings that found “no evidence” of whatever point you made that I’m now too brain-fogged to remember. Could be primary research (e.g., NIH randomized double-blind, a meta-review of the literature, or simpler types (e.g., descriptive or interview).] I only hoped I might score an easy hit w/o having to search PubMed/Google Scholar/etc. myself. I’d still appreciate a good link if you or anyone finds one later. Sorry to bend ears. Cheers. Best, mike

[Tall_Allen in reply to pete-ginger]

Hi Mike-

You are asking for a logical impossibility. I didn't say there is evidence that it doesn't work, I said there is no evidence that it does. Those are completely different things. If you believe there is credible evidence - show it! I'm not saying there never will be evidence, I'm just saying there is none so far.

Since you are fond of astronomy, it would be as if I said there is no evidence of teakettle orbiting the Earth, and you kept asking for evidence that there is no evidence. If you have seen evidence of the orbiting teakettle, show it!

[pete-ginger in reply to Tall_Allen]

Hey, Allen. The way scientific evidence (and sense-making) work(s) is that when someone/anyone makes a claim in a field, s/he is responsible for explaining why it is a valid and reliable claim. You made a claim. I’m new here but curious enough to want to read about it. You decline, saying there’s no evidence. Respectively, to maintain scientific credibility, if someone makes a claim, s/he is bound to answer questions truthfully, to help others understand why. Frankly, No evidence?” What researcher says so and: 1) why?, and 2) so what? If you were presenting at a scientific conference, the Q&A would be voracious otherwise. Ball’s in your court, not mine. This is the way that critical thinking and logic work, too. No teakettles in orbit; in the space station, maybe. I’m not disputing; I’m just curious, and you seem to be one of the key Answer Men here. Help me out. Please. I’ll both ask for and also share other sources/citations over time. But forget this one. Mine was a minor inquiry. Best, mike

[Tall_Allen in reply to pete-ginger]

Mike- I guess you need to take a refresher course in science and logic. Answer your own question:

A) What would evidence of a benefit look like? Let me help you- it would look like a randomized clinical trial where the ones who were treated survived longer.

B) What would evidence of no benefit look like? Let me help you - it would look like a randomized clinical trial where the ones who were treated survived the same (or less) amount of time as the control group.

C) Now- What would evidence of no evidence look like? It would look like no evidence. This is the question you asked, which I hope you can now see is logically absurd.

It's as if I said there is no evidence of an orbiting teakettle, and you asked me to prove that there is no evidence. The claim is that there is no evidence. There is certainly a way to falsify the claim - show the evidence. The ball is in your court, Mike. I hope you get it. BTW- this example of logical absurdity was made up by Bertrand Russell (look up who he is).

[pete-ginger in reply to Tall_Allen]

amazing. basta.

[Tall_Allen in reply to pete-ginger]

I thought of an amusing response:

Einstein (in 1915): "Because there is no evidence of General Relativity, I propose 3 tests"

Mike: "Show me the evidence that there is no evidence!"

Einstein: "There is no evidence to show. That's why I am proposing collecting evidence."

Mike: "But you haven't proven that there is no evidence."

[pete-ginger in reply to Tall_Allen]

In 1915, Einstein was the most famous physicist— and arguably any kind of scientist—in the world.

When he gave his informed scientific opinions that there was no evidence about something, other, lesser scientists quaked. Because they knew Einstein had done his homework.

As opposed to mere mortals’ personal opinions without explanation.

I just listened to an hour-long podcast, Jan 2021, with Dr Phillip Kantoff, Medl Dir of Memorial Sloan-Kettering, and a global expert on PCx.

At several points Kantoff said, we don’t know, I can’t say, but what I think, why I think so, from this slide we see, from study x we know a and from study y we know b but we still don’t know about c. At one point, he said, we just don’t know...although I have my hypothesis. Scientific evidence. One pebble at a time into the wall of knowledge..

[Tall_Allen in reply to pete-ginger]

They didn't quake. Some collected data (like Mercury's transit of the sun) to determine whether General Relativity's prediction was true or not. "There is no evidence" is certainly a valid answer, until there is evidence.

[pete-ginger in reply to Tall_Allen]

Or, like MSK’s Dr Kantoff, we could all be transparent and answer simple questions.

Like scifi? To paraphrase Arthur C. Clarke’s Roy Scheider-character in “2010”:

What did you find?

Nothing conclusive.

Nothing conclusive??? What’s going on here?

What do you mean?

Well, I may not be the sharpest knife in the drawer, but my understanding of the way things work is that I ask you people questions, and you answer. You ask me questions, and I answer.

No more silliness for me on basic research methodologies.

m.

[Tall_Allen in reply to pete-ginger]

I certainly did answer your simple question - I said there is no evidence. You don't seem to accept that answer, so find the evidence. Good luck.

[Boywonder56 in reply to Tall_Allen]

hey t.a. said sumthin funny....watch out j.o.h.n.....

[Boywonder56 in reply to pete-ginger]

go argue with a wall....jeeze...

[Kaliber]

Amen

[ron_bucher]

Has your oncologist mentioned Taxotere? My oncologist believes it kills the tiniest tumors regardless of location.