CAREFUL WHAT WE SAY, PRONOUNCE AS TRUTH HERE. NEWBIES MAY THINK ITS GOSPEL.
I hope all of us who have been here awhile would try to take the time to say “I don’t know and “there may or may not be any truth to it but my MO told me this” or “ I read this in” …..
This morning (maybe I didn’t have enough coffee) I momentarily took what a brother here said as gospel. If I was new here, I might have been depressed (actually I did go down a depression hole briefly) to see what was said and again it was not solid information that was spoken but spoken (written) such that it seemed very factual. And in my case depressing if true because it downplayed a treatment I am counting on in the future as not viable down the line of successive treatments.
Most of us can wade thru and decide for ourselves but we forget newbies come here too and may be misled by our words if our words sound matter of fact. Just a reminder to add that simple “not sure”, “could be wrong” “needs to be looked into” etc.
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Right although I don't want to dismiss the many accurate contributors to our knowledge which I alluded most of us have been absorbing for awhile and are able to form opinions and intelligent conversations with our MO's due to this and helps us to better understand our medical teams treatment suggestions.
And with the above and the individual experiences here that inform but also console and form comrade this forum is gods gift.
you’re welcome to think of Malecare as god’s gift or divinely inspired. But it is the people and volunteers here that make Malecare great. Everyone here makes Malecare helpful to each of us.
Funny because I have no formal religion. I need to take more time to choose my words. I guess more aptly the forum has been a godsend or a valuable shoulder to lean on. Again obviously I am not awake enough today to express myself as it were.
I don't have time to provide counter-arguments to everything posted here, but I often see the Dunning-Kruger Effect at work in posts I do look at. It's very easy to get seduced into thinking that everything Dr Google says is gospel.
Absolutely that too. And Dr. Google is an egregious example. Your link is a prime example. But was that the link you actually meant to add. You have another (pseudo science) and maybe another that addressed the Dunning-Kruger Effect.
The above is way out at the end of the scale as I was addressing here the minor end of the scale. Most of us here have absorbed a lot of information (good information, trial results, etc.) and I know I am not an expert or for that matter the most intelligent guy around so I have a lot of new knowledge swimming around in my head and its almost the "know enough to be dangerous" scenario. So a reminder to those like me to add a "I don't actually know" "could be wrong" etc. when we might be accidently pontificating.
These things often ( I hope often lol ) get straightened out thru discussion in threads but again just a thought for caution. Again I had newbies in mind who already in a panic don't need any erroneous info. about outcomes etc. thrown at them as gospel.
Since you brought it up though on thought the pseudoscience is the most dangerous presentation. Its truly life and death. QOL can be affected if not death.
I mentioned the Dunning-Kruger Effect in the article about the Constitution of Medical Knowledge. Here's what I wrote:
"The Dunning-Kruger Effect is a cognitive bias on the part of incompetent people overestimating how much they know. In medicine, a little knowledge is a dangerous thing. When I started writing my novel, Thaw’s Hammer, about a killer virus, I thought I knew enough about the subject to write a credible novel. Four years later, I knew how much I didn’t know. I grew to admire the experts who had to understand the biochemistry of the replicative apparatus, the interactions with host cells, and the immune system. Viruses are the most numerous and diverse forms of life on Earth. Anyone who thinks they understand them is wrong. The experts differ from lay people in knowing they don’t completely understand them. Still, an expert understands a lot more than any lay person who thinks he knows more. I know enough to reject any advice from a Jenny McCarthy or a Joe Rogan in favor of advice from the CDC.
Overconfidence in subjective assessments, when contrary to scientific consensus, is also influenced by alignment with political and religious social groups. The Dunning-Kruger Effect is particularly strong on the issues of vaccination (particularly Covid-19 vaccination), genetically modified foods, and homeopathic medicines."
I think it's best to point people to the existing research, clinical trials, etc. and not try to come off as an expert ourselves.
I also don't have to defend the research of others if someone disagrees with it. I share what my doctor says, but I don't have to defend that either. It's best if people don't have "a dog in the fight" and just try to learn.
If we have an opinion on something, it's OK as long as we state that.
I have senolytics, AR's, splice variants, long reach, short reach radium, mutant mushrooms etc., etc. coming out my ears and think thus I know why I am under the treatment I am under or why I am considering this of that for the next treatment.
Best if no one asks me any questions lol. But if they do then again that as EdBacon said sharing of link (TA's links as well by all means) or exact words of MO are probably best for most of us but if we venture to explain something a hefty "I'm not the expert" "I might be wrong" "best to discuss with MO and to fully research yourself" are a nice way to end a comment.
Yea thats what I mean. The forum has been a boom for that for me. Ain't that a good feeling when without any input from you the MO goes in the direction you were thinking/kinda hoping of? Then able to ask the questions you still have on your mind regarding it that actually are if I can be so conceited "smart questions".
exactly, that’s what makes free countries so great, freedom of speech instead of restricted speech. We can never be certain who’s opinion provides the best advice or outcomes. By the time someone is old enough to have prostate cancer, they are old enough to know not to believe everything you read.
I think it is usefull to seperate the proven from the hypothesis. I value TallAllen for his fantastic knowledge concerning the proven. Beyond the proven are a huge array of everything from opinions to promising research which has not gone through Phase 3 trials yet. Im happy with opinions because I can research the background myself to see if there may be any benefit in the idea. So keep the opinions/anecdotes coming folks - Campsoups is right - we must learn to remember when we are dealing with non-proven facts and we can ensure in our posts that the correct framework is given.
Always bear in mind most of us here are layman sharing experience and some research. That is all. And yes positive thinking and encouragement too. Somebody commented that PC is a chronic condition, like diabetes. 😆😆
This may explain better where we are at in terms of treatment in general. The video was made 3 years ago. Jimmy Carter is still well.
Some of the data may need to catch up with new treatment. Right now there is some discussion as to how to define type 1 &2 because of the sensitivity of new scans.
Also the data may need updating. Various studies with or without Chemo + ADT/2 shows the median OS is more than 5 years. That is higher than ACS's 31% over 5 years. The UK OS also put the figure at 50% with indication that it might change for the better.
So that is the upside. Is that just the confused clutching at straws? May be the pros can tell us. 🙂🙂
the issue is that five years is basically worthless when you’re only 50 years old. We should be living to 85. Plus, the quality of life on all the cancer drugs, is very low. Immunotherapy seems to be gaining promise for prostate cancer going forward but currently, it is not a big success. Carter has a less serious type of cancer than most of us, on this site, do.
I always try to just share my experience and the treatments I’ve undergone and the results. I don’t advise anyone else on treatments, I’m not a doctor and not qualified to do that, and to my knowledge there aren’t any doctors on this site either.
Who decides what is fact? Fiction? Are you sure? Yesterday's fact disproved tomorrow with better technology... Was yesterday still fact because what was evident at the time was all that was available? And who dismissed personal individual experience just because it wasn't (experienced) by a larger cohort?
Isn't it funny how positive results by the "one" are dismissed, but negative(s) by just one, are included in side effect profiles of drugs, lol. WHY? Shall we look to the past and discover all those trials stopped, all those drugs no longer used, and dissect each and every modality moved away from? Hmmm, wasn't it fact "then" that it would help?
Buyer Beware! Dunning Kruger! Etc., Etc... All legit, but there has been truth found in even the strangest of myths and old wives tails, many unexplainable. We (science) think we know, everything, but we don't. But science itself is needed and useful in order to try and explain things, of course. And prescribed methodology is used in order to repeat experiments or results to validate a hypothesis. But....
If we go to a group chat session to listen to and share stories, do we stand up and ask someone who's spilling their guts out for verification of their experience? Proof!?
Hahaha, yeah... I thought so!
Again, who "decides" then what is real...
Only we can... And only we should sift through the minefield of data and information available, as we are the only ones who experience the joy, or folly, of our choices. When others decide, even when well intentioned, do they then accept responsibility for results? Even with my MO who feels he's making his best choice, guess really albeit and educated one at that, and a lot of experience factored in... He believes he knows, but like me, and everyone else here, and him, we don't! But it is OUR decision and ours alone. I don't believe I need anyone filtering or deciding for me what it good, best or real.
Steve Jobs did the same thing, and sure, it didn't work out for him, especially when data showed if he had followed the recognized (treatment) path, he might be here today. .
Maybe...
Understand, that my wife always complains that I'll disagree with you during a discussion, even when I agree with your position... If anything, I do this to test your mettle and conviction on the subject. Same goes here, I agree, that care must be applied when discussing "anything" but especially something I am just touching the edges on understandng. ut that said, I don't need anyone deciding for me what is right, wrong, correct or incorrect! That I will decide for myself. And I wouldn't be able to do that, if everyone was fearful of openly discussing their thoughts, experience or some interesting bit of information they've come across! It is in the eye of the beholder to decide if it's garbage or treasure!
Newbies? We were all newbies once... What makes us think we still aren't? What makes us think we have an edge on understanding? Because we access our data from approved sources? Validated scientific publications? And oh, yes, those trials that exhibit reaction by a large cohort of selected patients in response to a stimuli... Totally dismissed the "heterogeneity" of the disease. And unless you read the fine print of those included or excluded from the study, you'll miss the fact it doesn't apply to all, but a select and distinct group. There's that... Do you really mimic that group? Are you sure?
It's all good, and yes, once we touch down in the middle of a New York sized minefield upon diagnosis with the dreaded word "cancer" we need to be vigilant and decisive in our journey. But the assumption that we are all subject to being unable to understand, unable to sift through the data and therefore someone will do it for us, for our benefit... Is misguided and that is an unfortunate, and an error prone mistake. In my opinion of course...
We shouldn't be careful, we should be more aggressive helping others understand, if that is what's lacking. We shouldn't censor, but include information that assists decision making! We shouldn't hide, but we should stand tall and shout out loud, both our successes and or failures, so that others may see, and then subsequently, decide for themselves.
I know for a fact, I have benefitted from others experiences they've shared, maybe more so than possibly reading the multitude of trial, test, drug and other data that has saturated my brain these last few years.
Ok. Im with ya on all that. I can relate. Mine was though a simpler conveyance. A "it worked for me", "I'm not sure, but seems" from someone like me and many others when juggling personal and "learned" experiences and trying to relate them to others with a concern especially for newbies.
I do not give advice on the basis of medical expertise, but on the basis of experience. I have seen a lot of advice and treatments given to members by doctors that are totally wrong and worthless. (we even had a tread on this forum titled "stupid things doctors say). If I can guide someone with something better from my experience I am glad to give it.
All of what you say is true. I am particularly sorry about your diversion - however temporary - down a depression hole. While I think even these diversions are normal (maybe necessary?), I have found that (for me) depression about treatment leads to the co-opting of my intellect and desperate thoughts, which are much worse than depression. Allow me to ramble, as if you have a choice!
I remember when I joined this forum 4ish years ago, at that time PSMA-Lu177 was becoming the desperate rage, and people traveled to Germany, India, and other far-flung lands for a chance at treatment (still do)...their words almost always tinged with the overtone of pilgrimage to seek miracles and support their hope for a cure.
As novel, even brilliant, as the the treatment concepts are, it turns out that PSMA-based regimens are just another tool in the bigger treatment toolbox...and any one of these may or may not work on our individually-tuned cancers.
Last Friday, I started Pluvicto because my PSA has risen to above 2, Zytiga is failing, and a PSMA scan came back with enough tumor avidity for approval. The radiologist did not give SUV values, and I think my oncologist's recommendation for Pluvicto was somewhat radical, as the current (vague) standard-of-care would have me re-challenge the cancer with traditional chemo and start on Xtandi (which may, in fact, "groom" a new population of cancer cells with greater PSMA avidity).
But at 55 and 6 years post Dx with an initial statistical 5-year survival placed at around 30 percent, I figure I'm on house money. My oncologist and I are on the same page in that we are interested how my cancer responds to Pluvicto at an "early" stage of new metastatic advancement, and with apparently nominal PSMA avidity.
In my attempt to avoid desperation, I intellectually engage with my treatments, but try to have no emotional expectations of my treatments (if that makes sense). My main emotional interest is that I am providing a data point in the U.S. database for Pluvicto so that future PCa treatments have better defined, better tailored, treatment paths to choose from.
In the meantime, I will be depressed about my lifelong inability to even consider attempting of the insane bike grade in Pickleballplayer's earlier post. Sheesh! - Joe M.
If all goes well, it will be a complete 6 treatment regimen for 36 weeks, Spyder. My comment on "early" Pluvicto relates to the fact that, even just a few months ago, standard-of-care for my cancer would have suggested a more conventional chemo regimen like Xofigo (Ra 223) coupled with Jevtana (Taxane chemo) or Carboplatin (Platinum chemo), followed by Xtandi.
While I had Taxotere just after diagnosis, my cancer has not been treated with chemotherapy during this castrate-resistant phase. Since Pluvicto was just approved by FDA this year, oncologists (and patients like us) are trying to determine where it fits best in treatment timing. See, for example:
Hope you don't mind but I looked at your main page and you are the roller coaster guy. I lost track of you. When I came here around the late winter of 2020 to look around and not join yet you peaked my interest since you had significant bone mets, chemo first etc. like me. Still strange about your low PSA. Your roller coaster experience actually helped me to not feel so shamed by my waiting until I thought I had stomach cancer to see a Dr. This XXXX PC can strike without notice and I feel for you DX's so young.
I know what you speak of as far as chemo again in your case and understand how Pluvitco is possibly viable instead.
I just got my first Dox infusion about 2 1/2 weeks ago as chemo at dx 3 years ago, and Zytiga followed a year later has run its course.
You speak my language with the Xofigo too. I knew I would more than likely be in line for chemo again when I progressed and signed up for a trial to use Xofigo in combo (Dora trial). Its not the end of the world since chemo was in the cards anyway but I didnt get into the arm of the trial that combined Xofigo.
If I can stick with it I have 10 total Dox infusions per the trial. One down 9 to go.
Keep up the good work to help yourself spend some more time here.
Don't mind at all, CS! We are a community here - a virtual city of survivors and seekers.
I am still around, thankfully, but not without some survivor guilt. I've lost some very eloquent, intelligent, and determined peers here on HU. With this, though, I try to make up for my initial ignorance (thank you, Excalibur at Funtown!) every day.
I suspect a few things regarding my oncologist moving forward with Pluvicto. Right now, I am seen at Ohio State's James Cancer Center. It's a research facility, too, and my doc is not only MD, but PhD. So if I throw a topic at him, I think I catch him being PhD curious rather than MD structured, if you take my meaning.
Pluvicto was his idea. MY OPINION: I think OSU oncology is very interested in PSMA mediated treatments generally. I learned from my radiopharm tech that OSU is engaged in a study using PSMA Ligand + Radiopharm for neuroendocrine cancers, and said that he hadn't administered Xofigo in a month (an oddity for him), but has seen a lot of Pluvicto.
I was VERY interested in the neuroendocrine trial, because about 15% of us modern PCa-ers (meaning we've had "new hormonal agents (NHA)" like Zytiga and Xtandi) will encounter the neuroendocrine monster (2021 data). The good news is that NHA use has seemingly reduced this risk significantly (they used to say 30% when I started).
I heard that there have been pushes to rechallenge our cancer with Dox instead of moving to more aggressive chemo. I think that, with my increasing-but-still-low PSA, I would have definitely considered this! Hopefully your bone mets respond. Good luck to us both, CS!
Yes, a lot of great men and women, spouses, siblings have been here but sad to say in the past tense. But of course, we still have great men and women still with us. Having been here a couple years or more I at one point noticed the cycle of life here and wished I hadn’t noticed. But still so thankful to the forum here. Grateful for its existence.
You added more detail there with your MO/MD/PHD interesting to say the least. Pretty cool.
Dunning Kruger, Google MD, call it what you will, but far too often there are many folks on this website that do not have an MD but continue to give treatment advice, medical advice, and disagree with the findings and treatments done by those that are experts in the field and do possess an MD degree.
Often someone posts a question "what treatments should I do" or something similar, and immediately there are responses from folks on this site that do not have an MD giving Medical advice.
For the benefit of those seeking treatment or medical advice, especially those that are new to this site, it would certainly be helpful if responses began with " I am not a medical doctor and cannot give medical advice and the following is my opinion"
If someone posts a question "what treatments should I do" on an internet forum occupied by fellow patients and question-askers, then it seems obvious he is LOOKING for responses from folks on this site that do NOT have an MD. He has chosen, by himself, to not confine his question to only the domain of the medical professionals he has access to, otherwise this is the last place he would go to ask the question!
So I think the warning needs to go more to the people posting the questions, rather than to the ones answering (who, by the way, are NOT giving medical advice but rather are merely offering opinions on what they or others might do if they were in the shoes of the fellow asking the questions).
There is no reason to explicitly preface every single opinion given here with "I am not a medical doctor and cannot give medical advice and the following is my opinion." That statement is implicit in every comment made here. If that is not the default assumption of the man asking the question, he does not belong on the internet!
Yea I agree Mr. Wilcox took what I alluded to a little too far.
I'm thinking more of a recent example among a few:
A fellow brother here commented in a thread "You should not use Xofigo if you don't have bone pain. It is only used as a last resort when you have bone pain".
Just said that flat out without any maybe's or I think's lol.
Yeah, agreed... I am considering lots of options for when I'm JUST ABOUT to have bone pain, lol. I'd rather start a week before I'm in pain than a week after, if such a thing can be estimated.
One of the most interesting recent posts was the idea of putting radiation to mets that look like they might contribute to skeletal events or fractures in the not-to-distant future. Love the idea of nipping those in the bud!
yes, i have seen seven cancer doctors and five of them don’t agree with subsequent cancer treatments, even when i show them clinical trials. They usually say that the trials are tilted during the assignment of the control group and the treatment group. Those five support sequential treatment. I don’t support one way or the other but I have to make decisions after they contradict each other. Many other guys on this site told me the same thing they won’t do a clinical trial on this question because it won’t make money for anyone.
People who come to this forum and ask about treatments are well aware that we are not doctors. They come to the forum to ask, so should not surprised if everything people tell them isn't professsional medical advice.
I really don't like to see people making bogus claims about unproven treatments, but we are all adults here and we don't need to protect members as if they are children. I trust that those who come here have enough sense to do their own "homework" after reading this forum.
Speaking for myself, I need more than just reading statistics of clinical trials, etc. I want to hear from people who've actually done the treatments even though that's just anecdotal. Some of what we need isn't scientific at all, it's human interaction.
I have come to what I consider, for myself, an "objective" definition of what I call REAL pain: it's real if it's intense enough to keep me up or wake me up at night! Anything less is just "nuisance" pain (because if I don't look at it that way, I have to admit I've been in more or less constant pain for a good part of my adult life).
If I get a chance to do BAT and find my mets are causing bone pain at that point, I plan to lie about the pain so I can try it anyway. Call me brave, call me stupid, both will probably be true.
Im the same with pain. Get asked at Dr. appointments by check in nurses "Do you have any pain" ? My routine answer is none worth mentioning. Nothing too different than the past 35 years.
But I have had and especially recently have and will continue to have the cant sleep, cant find relief even on the couch, cant concentrate pain.
I hope that I am always guilty of saying "I am not a doctor and take this with a grain of salt" or words to that effect. A couple of thoughts though that I think are very much ignored.
Every single one of us is a unique biological being. As such we all have slight or major differences in disease progression, DNA, biochemistry, attitude, access to competent medical, radiological, oncological, urological doctors. But there are lots of prognostications on here saying that you will be miraculously "saved" if you only did what I did or wished I had done.
Desperation makes this all the more insidious. People want to believe that the one thing they need will be given to them here, with very selective responses for each person. Overall, I believe this is an excellent resource for those of us with advanced (or even early) PCa. I have used things I have seen here to make myself smarter and loaded with questions for my cancer team of doctors. I do find that many of the things I have described on here are shot down very quickly by the more knowledgeable docs.
And I personally realize that each doctor is an individual with varying expertise, knowledge, and even just plain personal bias. I find I have to take everything I hear with a big grain of salt and that I, in the end, have to be my own best advocate "armed" with at least some thoughts about what could or could not be possible.
I turn white when I see, very often in fact, those that "directly" state that a certain question-asker on here should do XYZ and they too will be better off with their cancer therapy. Often this "advice" is given with enough buzz words to seem to give the advice more credibility than it certainly should.
There are some on here that I trust much more than others. Even still, with those like Tall_Allen (not to swell his excellent mind and research), I try to keep a healthy skepticism on everything. I remember with my first read of supposedly trustworthy "facts" in places like Cancer.org I have found many of those facts to be disproved and/or incomplete. I still don't find depression, which is a huge issue for me with hormone therapy, listed as a significant side effect. I still am in disbelief since it has sidelined me from all current SOC therapies.
Still, having said all this, I know from seeing the replies and new postings that most of you are, in general, skeptics, and will at least try to get more information on everything they read here. And good luck to you all.
I suspect that doctors get a certain amount of information regarding the effectiveness of their treatments from the feedback they get from their patients. This website is largely feedback from those patients shared with the rest of us, so it has a certain amount of credibility, even if not on a large sample scale. Medicine isn't an exact science like physics or chemistry, so everything is really open to debate at this point. Just saying.
...good point...I may have made this mistake and is so I would regret misleading someone...on this forum I try to follow two rules; 1. Say positive things about what is working and regardless, 2. Never post something without a medical study to back it up. For this reason I dont rely much on our brethren who have this burden of PCa and who have a personal blog...interesting as they are there is no merit in using them to decide on treatment...
There is a third rule I use for determining what is 'true,' or accurate...3. Keep looking until you get at least 3 sources telling you the same thing...3 studies, three Dr's on podcasts...at least, or more...i.e., there may be 10 choices and none of them agree, but if you get out of that many options, 3-4 that tell you to do the same thing then you are getting close...
Finally in the end the only thing that we can do wrong is do nothing without evidence that the status quo is a viable treatment, not a deliberate evasion from taking action...TNX
I have had the same exact thought for quite sometime. Thank you for putting it out there. Tall_Allen is one person on this site whose statements I put give great weight to. Not only is he a scientist (I think) but he often supports his statements with links to scientific studies. And- he often corrects misinformation and dubious info that some of our brothers post.
I’ve seen some very prolific contributors here give flat out wrong advice, and double down on it, or rudely argue with or dismiss those who correct them with medical citations.
Bad egos there.
Definitely need to consider the source here. Does this person know what they’re talking about or simply inaccurately parroting something they read?
Look for opinions and advice but consider the source.
Yea being someone who has respected the "gray areas" all my life it is hard to understand how someone can be incorrigible about cancer which we still don't understand completely.
Gods gift pickle, is when our Phillies win again tonight ❤️… enjoy!
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