In 1995, McArthur Wheeler and Clifton Earl Johnson robbed two banks in Pittsburgh. They believed they wouldn't be caught because they had researched how to render themselves invisible to bank security cameras. They learned that lemon juice could be used to write an invisible message on paper that could only be made visible by heating up the paper. Could lemon juice make them invisible to bank cameras? They conducted an experiment: they rubbed lemon juice on their faces and took a Polaroid picture -- their faces did not show up on the Polaroid!
They rubbed lemon juice on their faces, wore no masks, and robbed the two banks at gunpoint. The Pittsburgh Police showed the security camera images on local TV, and they were soon apprehended. They were nonplussed and insisted the police had no evidence. It is unknown why the Polaroid failed to show their faces - perhaps defective film or perhaps they pointed the camera in the wrong direction.
The Dunning-Kruger Effect
David Dunning read about the case. He hypothesized that if Wheeler was too stupid to be a bank robber, he may have been too stupid to know that he was too stupid. Dunning and his grad student, Justin Kruger, wrote a paper titled "Unskilled and Unaware of it: how difficulties in recognizing one's own incompetence lead to inflated self-assessments." This is known as the Dunning-Kruger Effect.
Dunning and Kruger found that people who first start to learn about any subject have an inflated perception of how much they know. Paradoxically, when people learn a lot about a subject, they think they know less about it than they actually do know. As people start to learn about a subject, their confidence in their knowledge is never higher. If they learn more, they quickly learn how little they know about it. If they stick with it and learn even more, they slowly gain confidence in their knowledge. But they will never have as much confidence as they had initially - they have humility because they have learned how much they don't know, and perhaps can never know.
A 2022 study by Light et al. published in Science found that across seven critical issues that enjoy substantial scientific consensus, individuals (n=3,249) who have the highest degree of opposition, have the lowest degree of objective knowledge and the highest degree of subjective knowledge (they feel strongly that they know more than the experts but fail on tests of established facts). They examined attitudes about anthropogenic climate change, genetically modified (GM) food safety, risk vs benefits of vaccination, importance of nuclear power, the lack of efficacy of homeopathic medicine, human evolution, the validity of the Big Bang Theory of cosmology, and Covid-19.
There are many other reasons: Socially-derived knowledge, Conspiracy Theories, Believing the Worst, difficulty understanding randomness and statistics, Inductive logic, and failure to understand "levels of evidence" and GRADE. Dr. Google and AI only serve to get us to the the peak of confidence in defective knowledge faster. The only solution is reliance on science and experts.
That's so true, and in the case of personal medical issues the emotional need for certainty drives bad decision making processes.
IMHO, there are few professions that really teach this kind of intellectual humility. Science and trading come to mind. Good scientists know that today's state of science is just that. Today's placeholder. It will not be the same at a later date. I was a financial trader for 28 yrs. I knew I was going to be wrong. A lot! So, incorporated that into all my thinking.
With Google, AI, bias, clickbaiting etc I'm at the point where everything I read is considered a "maybe". There are a few people whose competence and good-faith I trust. You are one. I thank you for all your efforts. I "met" you too late for me, but you have helped a few friends who joined the club after I found this site and came for advice. Happy New Year.
Probably. Two things I would have done differently from what I've learned from TA. Get a second opinion on the biopsy. It mentioned "possible EPE". If that turned out to be false I would have done some sort of focused radiation treatment and avoided all that goes along with RP. In defense of my GP (who strongly pushed RP) and my MD GF who also did, my timing was right on the cusp of where the evidence was solid that focused radiation has at least as good of survival rates as RP, and obviously much lower incidence of SEs. Hope that answers your question.
Thanks for your timely reply . Great point on your 2nd Biopsy opinion which I recommend to all my new fellow "Club Members ".
Take my own example : Biopsy #1 A targeted 5 core : Transperineal MRI Fusion Biopsy . The result - NEGATIVE . This was in conflict with my MRI PI-RADS 5 score .
Biopsy # 2 also a Transperineal ; 16 Core . 6 cores in the same target area was Gleason 3 + 3 = 6 . A 2nd opinion - ALL 6 Cores Gleason 3 + 4 = 7
A 3rd opinion - 4 Cores Gleason 6 with 2 Cores Gleaso 3 + 4 = 7
I have been on Active Surveillance for just over one year . My year-over-year comparison MRI ( with contrast ) results , showed no change . Recent Bone and CT Scans were clear . Currently I am considering the following treatment options .
NanoKnife , TULSA PRO and Monotherapy SBRT . At all costs I hope to avoid ADT . I will soon be approaching 85 years young and in otherwise excellent and fit health .
My experience, as with others , with newly diognosed patients . They have ZERO CLUE what to do next , more often they make an uneducated knee jerk treatment decision . I advise them to purchase Dr. PatrickWalsh's book : Gude to Surviving Prostate Cancer Edition 5 . Educate yourself , take your time making an informed , educated decision . You have time -- You are NOT going to die tomorrow .
I have personally counselled individuals in Canada , USA , UK , Germany and Australia. None to date have selected a RP . ALL THEIR OWN PERSONAL & FAMILY DECISIONS . Several have chosen: NanoKnife , EBRT , SBRT Brachtherapy + ADT , Cryoablation and Immunotherapy.
I spoke extensively several months ago with Dr. Chopra the inventor of TULSA PRO during his tenure at Sunnybrook Hospital in Toronto . I have an upcoming consultation with Dr. Laurence Klotz , also at Sunnybroook . He was on the research team with Dr. Chopra . Additionallly , I will discuss active surveillance with Dr. Klotz as he has published AS guidelines , candidate selection etc , from his extensive research on the subject .
TA: Your article on ProstateCancer.news is fantastic and everyone on this forum should read it.
I've come across some of the examples you reference, such as positive mentions on this site for fenbendazole. And while I have been very interested to explore estrogen add-back, I have not done it because the more I read the more complicated it gets. And even the scarier it gets.
All this said, in a perfect world we would have perfect doctors and experts and we would have 100% trust. As you state in your article decision making should be mutual. But the world is messy and not all doctors work to keep themselves up to date. And in my own case my doctor as opposed to PSA testing and did the annual perfunctory DRE. I trusted my doctor and didn't even know PSA was something to learn about. And thus my diagnosis occurred much later than it should have.
It's possible that some experts are not worth trusting and systemic corruption of the episteme is possible. There's science and then there's idolatry of science, which has been called "scientism". And institutional governance can go wrong. As you point out, science is dynamic and understanding so are constantly evolving.
PSA and prostate cancer screening has been abused by the Industrialized Healthcare Complex and the creation of the USPSTF's power in the implementation of the ACA. I am working on compiling a paper on how the US Industrialized Healthcare Complex fuc××d men in the US regarding prostate cancer. SO corrupt and deceptive!
I too have a late diagnosis of advanced prostate cancer.
Cancer generates motivation to indiscriminately believe all sorts of quackery.
We are all subject to this. It must have worked well on the plains of the Serengeti 200,000 years ago.
I submit you may want to readdress your views on AI. I think you are falling prey to the same effect.
AI is not at this point intelligent. Treating it as such is what what is causing the problem.
I have been experimenting with the paid AI services for about a year.
What it can do is access inhumanly large quantities of information and see things normal humans can not.
If you used it as a supplement to your own current rigorous research process you might find it useful. It would not degrade the quality of your discriminating output.
If would certainly increase what you can do with the finite time you have to do it. You are pretty thorough, but I think it would likely help you there once you got through the learning curve. And it's steeper and longer than you might think.
You can experiment with different ai on poe.com. I would expect chatgpt 4o to be the one you would find most useful.
PS: I sent a copy of your article to a conspiracy minded relative who has difficulty discriminating between facts and imaginary chains of causation.
He always starts with incontrovertible facts, the somehow ends up in lala land. He is unable to discern when he makes the cross over.
The authors of NCCN guidelines (one of the sources of SOC) have been doing that for many years. They have judgment, paying attention to levels of evidence, grade, and qualitative factors that I doubt AI can ever duplicate - plus, they site sources so we all can see how they came to their conclusions.
My first oncologist professor Richard Epstein said multiple times when I asked him something specific: "We don't know." And he was at some point of his long and successful career a Dana Farber oncologist. Just letting you know.
My next door neighbour is now dying from lung cancer (very skinny) and said to me that chemotherapy is not for him. He also said that COVID 19 vaccination is not for him. I suggested to ask for liquid biopsy and maybe immunotherapy drug keytruda if he is eligible. I gave him the oximeter in order to check his oxygen saturation level instead of looking often if the ghost is at our doorstep.
Thanks again to Tall Allen and the supportive members here. I think we can also use science to study where AI advisories fall short exactly, and what sources are utilized. If a given AI search used pubmed studies, journal articles, and articles from TA's newsletters we would be off to a good start in using science to explore a research question, in searching what are the current theories, what the statistics tell us, and what needs to be scrutinized in going forward. But that, of course, only brings us to the point of asking useful questions in queries about prognosis, therapeutic outcomes, or effectiveness of meds.
Added into the willfully stupid group are the desperate. Which lots of folks here are. Desperate, not stupid. We all want a miracle cure, but my deep skepticism saves me from believing things like horse dewormers are the cure for cancer.
Totally agree with what you wrote. That is why the research I did when I was diagnosed with prostate cancer was focused on finding the most experienced, knowledgeable team of providers available and follow their advice. In a problem as complex as diagnosis/treatment of various stages of prostate cancer, there are nuances that will be unapparent to the layperson, no matter how well read or intentioned, but understandable to a highly skilled/trained/experienced practitioner in that specific field.
"A little learning is a dangerous thing because it can lead the critic to think they know it all when they, in fact, know very little. A little learning is more dangerous than complete ignorance, because it gives you the illusion of knowledge when you, in fact, have only cursory knowledge of the subject"
I rely on the experts....ahem....most of the time. 😀
great article!!! Most of you aware of my harsh criticism of crap lists of cures etc. which st times has been draining to both my mental and spirituality of helping others. The dangers of allowing these posts is clear in TA post.
What we can do is to provide each other with the impact of various treatments etc do we can build our own library charting what works, or not, and most importantly, deal with the side effects that our various treatments have in us.
It is this combination that we can be most effective in helping each other!!!
Some subjects are more conducive to expertise than others. I would always listen to oncologists over Google but Malthus was wrong and will always be wrong.
Malthus was right at the time (1798), but couldn't have known about Peruvian guano (1802-1884), Chilean saltpeter (1873-1914) , Haber's synthesis of ammonia (1913), Norman Borlaug (1960s), and GM crops (current). Scientific truths are always provisional and depend on testing many incorrect hypotheses. It took 228 years to prove Newton wrong about gravity!
Which of course means that he was wrong and will always be wrong. Terrible decisions were made based on Malthusian doctrines. Analogies can be drawn with other mistaken analyses. It tends to be the analytical moment in scrutinizing data where experts do disagree regardless of their field. It’s the dialectical nature of consciousness. Nutritional sciences are about the most interesting manifestation of this.
He wasn't wrong at the time, but he didn't have a crystal ball - no one does. Just as Newton seemed right for 228 years. Malthus is a good cautionary tale -- it is where we'll be if the greeners get in the way of GM crops.
It seems that everything in PCa should be taken with a grain of salt as most everyone seems to react to treatment differently. The SOC is aimed at an average group not the individual. This makes it difficult to discern when it is working marginally or when side effects become the main event and another approach should be tried. It leads to the thinking that SOC is the only safe alternative.
Obviously SOC should be applied initially as the most likely to work, but that only becomes a known after it is tried and is successful. SOC should include alternatives and when some should be tried and some not. Trials don't cover that gap, so Phase 2 is presented with many different ab initio SOC alternatives - from what I see as a layman patient.
The Covid vaccine is not a great example of applied science, it was laden with political debris and supported with politically correct fervor. First, it was not a vaccine to prevent the disease, but it was sold as one. Secondly bad side effects found in testing were hidden from the public. Third, critical scientific opinion on it was completely suppressed, even though we know now it was true. Fourth, it was forced on all the public when it should have been ordered by a physician who knew the age and vulnerability of the jab victim. Fifth, it resulted in thousands of business failures, school closures, impinging on personal freedoms, and millions of lost jobs that still take their toll. Experts have demonstrated they do not know best.
Not to mention the Lab that produced the virus was also run by the PLA who use it for biological weapon research, and it was sponsored by the same US entities who mandated the "cure"..
Odd then that a plague that saw hospitals and morgues overrun was pretty much stopped in its tracks after most of the population was vaccinated. Yes, even vaccinated people still become ill with covid but a much lower percentage of them succumb to this disease. And no, I don't recall this vaccine as being 'sold' as anything other than preventing serious illness and death -- not something that would absolutely prevent one from catching the disease. As far as bad side effects -- bleep happens. No vaccine or prescription medicine is absolutely safe for everyone. Death is the nasty side effect of not getting vaccinated. There were plenty examples of vaccine refusers who would speak to that if they could.
Comirbidities made the disease worse or vice versa but all such deaths were reported as Covid. Was there guidance to vaccinate or not those vulnerable from some diseases? Didn’t see that but it’s something their physicians could figure out. Whole thing stinks.
Pure conspiracy theory. Recommended reading: Conspiracy: Why the Rational Believe the Irrational by Michael Shermer and and Culture of Conspiracy: Apocalyptic Visions in Contemporary America by Michael Barzun.
May well be. With majorities and a new approach Cabinet we may see deep and thorough investigations identify malfeasances instead of supporting political conveniences
Interesting tale due. There is much to be said about doing your Own research, it's a awesome thing, the truth is Dr's and experts compare statistical data, historic data that had been documented well, but as the truth goes everyone is Not the same, hence treatment for you may not work for me, this is why we need to be experts ourselves to be able to make a more accurate informed decision. You have to trust people that don't know you all the time this is no different. Do your own research and compare with pros that have an intrest in something other than your wallet and their reputation. Ditto.
Be aware that for most people, doing your own research only gets you to the top of Mt.Stupid. I've found that most doctors are genuinely interested in helping patients. There are easier ways to make money.
Most urologists only steer men towards treatment options, such as radical prostatectomy, that they are trained and knowledgeable about. Doing one's own research is an absolute necessity when choosing a prostate cancer treatment option. That's what makes this disease so challenging. There are many choices and the decision must be made at a time of maximum stress after diagnosis. That's why this forum exists -- for men to research their options and learn from other men dealing with this disease and not slavishly follow doctors' orders.
The problem is not so much in doing your own research - that genie is out of the bottle - the problem is believing your own research (or AI). A professional medical researcher has humility. Patients, who are not professional, must have even more humility.
I'm not debating your article. I think it's spot on. Personally, the output of AI is only as good as the input. Your question to Chat GPT is too vague for any accurate information is is one of the biggest problems for AI. How a question is phrased (Input) is paramount. Garbage in garbage out applies. One could rephrase the input and include one's complete medical history and also ask the AI tool to site sources. You could also direct AI to only provide information sited from the last XXX months. You could also rephrase the question several ways to compare answers with all other input being the same. Again - I'm not arguing your points and am in agreement with your article. I use AI to drill down on current successful solutions on many subjects (and very few are related to my cancers fwiw) as I'm apparently always climbing Mount Stupid. Excellent write up TA, thank you.
None of us are becoming medical or prostate cancer experts by doing online Google research or asking AI.
However, medical reference websites or clinical resource platforms allows us to gain a broader, more holistic understanding of our disease and potential treatments.
This understanding empowers us to ask informed questions during meetings with our MD or a prostate cancer specialist (if we have access to one).
The reality is that most MDs’ knowledge of prostate cancer is not at the level of specialists, and there is often a difference in their approach or thinking. This is why it is crucial to stay as informed and updated as possible, through any means available.
I completely agree. In fact, dont believe me, Tall Allen, or even your Urologist and Radiologist at first glance; do you own homework. Ai makes mistakes; I did 5 searches and found the same result before I posted my last Ai message on line. Even then, dont believe what you read. What I like about Ai search is that it includes the references used in the summary. You need to open them to make sure they say what the Ai summary reports.
If I told the group that lemon juice cured prostate cancer you should be very wary indeed. This is facetious for sure, but think very carefully on anything you read or are told and always double, triple check before you act. At least with Ai you get references, many of which are studies, some of which are very well done. With my Urologist and Radiologists I got a prescription for a treatment regime that I now know was not based on any feedback from patients they treated. This must be the case, or I happen to be the only patient these doctors have treated in the last 5 years that was never been contacted to determine how effective the surgery, radiation and hormone treatment was. If any of you have been contacted by your Doctors to determine how things went let me know...
So I find Ai a really good cross check on my Doctors; it keeps them honest. I ask them questions they seldom hear and it affects my treatment in a way I am happy with. I get additional testing before I launch into the next treatment phase and at the end I can have more confidence I did my part; I was my own best advocate.
If you have never used an Ai search service I highly recommend it. From maintaining my 1965 Ford Mustang to determining the efficacy of prospective medication, I find it extremely powerful. I get the references used in the summary and check those. I conduct at least 3 searches and make sure they triangulate. Then I bounce all this off my Doctor. At then end I make the decision. TNX Rick
One real-time contradiction is my medical team has reduced my Stage 4 to unmeasurable T and PSA but increasingly bad SE’s. Request for drug holiday was rejected because variants would pop up without continued treatment. Second opinion from MD professor of oncology at a well known cancer center says I should be able to, and any return is easily detected and treated from her experience. Why isn’t that a track in the SOC?
My understanding is PCa isn't curable if initial surgery or radiation (initial or salvage) is unsuccessful. All Standard Of Care after that amounts to basically delay tactics. Some tactics make a bigger difference than others. Some having a better benefit (amount of disease retardation) to cost (as in side effects) ratio. (In addition to financial cost and time out of your life to get treatment.)
Dealing with the fact of mortality, cancer or no cancer is something we all have to go through that is uncomfortable to say the least for most I think. The human instinct for survival is strong.
I believe in a well informed balanced approach. A strategy using the current Standard of Care as a foundation but customized based on careful choices tailored to the individual. These choices could include modifying or forgoing some aspects of standard of care due to the individual's lowest threshold for the benefit to cost ratio.
Some things may add years to your life, some things months but at a heavy cost (SEs, money, time.) At the end of the day the choices are made by the patient.
As far as things outside SOC, my personal rule of thumb is there needs to be significant in-vivo (lab animals) and at least some human clinical evidence both of which only show statistically significant benefit without significant risk of serious side effects or negative drug interactions. And this means it's just an option for consideration. Quality of studies is highly important but due to the relative lack of funding for non-pharmaceutical approaches, very rarely is their any result that doesn't always include 'further research is necessary" that is outside the SOC. But within that category there are things with weaker evidence and stronger evidence.
I would never use AI as if I were getting a second opinion from a trained Oncologist but as potentially a filter to steer me towards areas for deeper investigation.
As challenging as this disease is for my husband and me, I think equally as challenging is receiving the many "well-intentioned" suggestions for alternative treatments. It continues to amaze me (but I can pretty much predict) when someone from out of the blue that we may or may not have an active relationship with will say something like, "I wish you would try..... this worked so well for my....." I try to graciously thank them for their "concern" but assure them we are following our medical professional's chosen course of treatment that has been proven to extend life even if its not a cure. They have a hard time accepting this because they believe there is a cure through Ivermectin (or whatever). I don't have the energy or interest to prolong the discussion with them. The burden these folks place on us can be a heavy one if we let ourselves go down that path. I appreciate your article. Thank you.
So, don’t do research? What are we all doing on this site? We’re here to learn and gain knowledge?
Yes listen to your Oncologist but it’s ok to get a second opinion and a third. Read, study, learn all you can to make an INFORMED decision.
Patients will look for info from the Internet -- the genie is out of the bottle. But have humility: understand that you may be wrong (for all the reasons discussed in the article), and be willing to be corrected by actual experts.
Hi Tall Allen There have been many articlws on You tube recently about cancer being a Metabolic disease not a genetic recently. These all come from the work of Thomas Seyfried. Are you aware of this work And would you recommend a low carbohydrate diet?
No I do not remember any specific article on sugar other than it feeds cancer growth. I thought that it was universally known that you should avoid sugar.
Sorry, I meant the article I linked at the start of this thread. No, it is not "universally known that you should avoid sugar," except by conspiracy theorists.
Somehow media, social and traditional, has become complicit, providing way too much attention to those in opposition to objective science and facilitates self deceptive expertise.
None the less it’s prevalent in our culture that: “drowning men grasp at straws” (Thomas More) and “There are more things in heaven and earth, Horatio, than are dreamt of in your philosophy” (Shakespeare).
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
How many of you are using tE2 as your only form of ADT?
What AI should i be using for my cancer research 
Sorry to be a party pooper
Learning about salvage therapies
sulfonylureas .. metformin and adt question
