Daniel Kahneman, the behavioral economist and Nobel Prize laureate, has a new book out called "Noise, A Flaw in Human Judgment". By "noise" he means detrimental variability in judgments made by humans. Which humans? -All humans including judges, doctors and us. Deviations from ideal judgment creep into all decisions made by humans. Always and everywhere; sometimes they are small deviations and sometimes very large detrimental variations. And we do not see it, and cannot detect it, even in our own individual judgments. It is invisible to the person.
This applies to even very knowledgeable doctors with excellent training, are up-to-date in their specialty and are diligent and dedicated clinicians. And it applies to ourselves in making judgment decisions about our own choices of care. It is a problem: We cannot be completely trusted.
Why is this? Kahneman states it is related to "naive realism". This is an error of thinking, of perception. Its meaning is that any and every human being has only a limited and incomplete perception of the fullness of "reality" in any specific situation, time and circumstance. Our perception is incomplete and this is always changing as it is influenced by the immediate circumstances and context. And yet, we always have the "feeling" and therefore "belief" that how we are perceiving is actually the fullness of reality. For we can only have one limited viewpoint on it at a time. And it is subject to enormous biases and influences. That is the "naive" part, an invisible and unintended sort of arrogance. And in another circumstance, on another day, the same doctor would see the same set of facts (your case!) differently and make a different judgment. These variations can make deviations and departures from the most sound judgment. This phenomenon is well proven and ubiquitous.
So how can we deal with the potentially detrimental effects of such "noise" on our physicians' and on our own judgment? Kahneman describes several ways to deal with this, including many involving medical decision making. One primary means for correcting this is to establish guidelines from a consensus of most knowledgeable experts in a field, evaluating the best available and most sound objective evidence. Such careful consensus-making causes any individual's judgment on any given day to be averaged out of the consensus. What do we call this? It is called the Standard of Care (SOC). That which so many of us chafe against, myself included. This resistance or chafing is itself a normal and inevitable response of a human being to resist any outside framework being imposed upon their own judgment.
However we may feel, the SOC is a moving and evolving entity as new information, new RCTs, contribute new information and choices to the SOC. So however we may dislike the restraints or constraints of the SOC, we should nonetheless respect it as a sound foundation. Not the end-all be-all but as the best foundation we have.
When we consider treatment options that are alternative to, or in addition to, the SOC, we should be suspicious of our own (or even a physician's) judgment. Research it. Ask questions. Weigh the potential benefits vs. the potential risks. Take your time and proceed with some caution. It is healthy to be suspicious of our own possible biases. For our own opinions and our deeply held beliefs are not "true" simply because we hold them or believe them.
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MateoBeach
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I agree 100% with Jeff. THINKING FAST AND SLOW is an excellent and enlightening book. If you read it, I guarantee that you will discover some flaws in your own way of thinking. And you will probably never again use the phrase "I have a gut feeling....". From Paul's summary, it sounds like there may be some overlap between these two Kahneman books. For example, "...we always have the 'feeling' and therefore 'belief' that how we are perceiving is actually the fullness of reality" could have come from Fast and Slow.
Agree completely. Great books for thinking beings.
The podcast "Hidden Brain" just featured him; titled "Our Noisy Minds". Link for the podcast is: hiddenbrain.org/podcast/our....
I will need to listen several times as I kept day dreaming during the podcast! And get his book.
We discover the enemy in thinking that we are right , is ourself .. We are all heading off the cliff Paul.. enjoying what we can from here to there is the only point. I ve got the pills. Have yet to take them.🧐
SOC is fundamentally a flawed concept as it treats a large group of patients as a single entity and then, imposes the same guidelines on everyone in the group.The very assumption that...this large group needs the same treatment is itself faulty because the patients in the group are individually different and there are many subsets of more similar patients. Therefore, the same yardstick is not right. In order to be effective and reasonable, SOC has to deal with subset of patients (based on similarities of factors) with sets of guidelines tailored to each subset.
An example would be a highly responding, physically very healthy man , with Gleason 3+4,
No Germline Mutations can not be lumped together with a man with PCa with Ductal histology, very low PSA producing cells, Lytic bone lesions, NE markers positive and BRCA 2 positive , Gleason 5+5 and so on......First man does not need to be subjected to a highly toxic combination of Lupron, Zytiga and Docetaxel...Yes.. this toxic cocktail may be justified in case of second man.
Based on my own detailed biomarker ,clinical, histological and imaging analysis , I decided to put myself in category 1 above and refused heavy SOC prescribed. This was a right decision as I did not need the highly toxic cocktail as my case falls in a milder version subset.
So, Bicalutamide alone with plant based dietary and supplements plus rigorous daily exercise is keeping me fullyt afloat with PSA of 0.9.\ and ALP below 70. This does not mean I will not upgrade my treatment later if needed.
SOC needs to evolve further to stratify subsets of patients and accordingly set guidelines based on these subsets. ONE SIZE DOES NOT FIT ALL.
But when the goal is to maximize sale and make huge profits...there is no incentive to work on sophisticated biomarker and clinical analysis of each patient's PCa and stich fitting treatment plan. This is just like a business suit stiched by a reputed tailoring company in Paris in contrast to readymade, baggy, unfitting suits mass produced and shipped from China.
Today's SOC is like these shipments of suits from China...just the same for everyone...baggy, ill fitting and outright UGLY.
Chemo for all, Got Zytiga for all...Here is Lupron for all..I have bone infusion for all...I really need to move the metal..a lot to sell..a lot to sell..Buy one get one free Chemo..Memorial Day sale.
I was using “SOC” in the best (optimistic?) way of all best established care in all circumstances, including branching to delineate variations, stages and even individualized care. “one size fits all approach” may be paraded around as the standard. But it is not of course. It is laziness, perhaps greed and letting the drug reps do the prescribing. That is not what I meant by SOC. It is not “standard” or standardization, but rather a current “gold standard”.
MateoBeach..From MD to MD..I can't resist not telling this joke..
Patient: "Doctor, I finished my 14 day course of Antibiotic and my urine culture is fully negative now." And I have no symptoms."
SOC Doctor: But you need to be on a combination of 3 Anti Biotics for 30 days as per SOC".
Patient: But why Do I need 3 antibiotics now. See my Urine is 100% clear and normal now."
SOC Doctor: " Well..You are a difficult patient..You need to follow SOC..What if some Bacteria are hidden in some corner of your bladder and starts multiplying again some day."
Patient: "Hell with your SOC..I refuse any more Antibiotics..Go put all your Anti Biotics in drinking water...what if a few bacteria are lurking in some people's body in some corner."
I can't resist saying I don't get it. Then again, I'm not an MD. Come on j-o-h-n, Anti Biotics, drinking water, bacteria, lurking, bodies in some corner. I'm sure you must have a comment.
I have an abstract painting. $4 at a thrift store. After 20 years, I still don't know what it means. I'll try again. Don't tell me. I'll try again tomorrow, when I'm drunk.
Just my perhaps totally wrong-headed view. Those here on healthunlocked represent a VERY small subset of all the men dogged by this cancer.......and few men outside this small subset have the time or the inclination to put in the time to do much second-guessing of the MDs. At least that is what I have found as I have attempted to discuss the subject with a few victims I know in Portland. Almost all who had surgery, seeds, etc could not even tell me their Gleason.....or what it meant! Yes, I agree with the "individualizing " of care...but this will probably become a reality only when Docs have the benefit of big data AI that right now seems to be locked away in the medical files of the hundreds of thousands, or I guess millions, of men who have been diagnosed with PCa over the past 20-30 years.
My problem with SOC is that it is slow and unadaptable and concentrates on big money treatments. It is way too dependent on big pharma fashions (and profits). Getting an approval (from FDA or in Australia, TGA) is a painful and expensive process. Why is not a good deal of that money being directed to re-use and modify old cheap treatments from other fields? SOC is the best we have got but it should be much much better. Proof of that is the large number of us who say: "OK, SOC is the minimum, but what complementary therapies can increase my chances". If SOC were adequate, no one would need to think that.
Happy my post inspired such poetry. Moment of silence in my appreciation. But I think Kahneman did not use “noise” in that sense, though it is from the mind- that which makes it impossible for the mind, due to intrinsic nature of limited or partial knowledge to perceive the fullness of reality. Even Adi-Shankara would agree with that. Only the Self can know the Self, abiding as the Self, beyond thought and beyond mind. Ayam atma Brahma; Aham Brahmasmi. Thank you for gift of your presence and reminders. Tat tvam asi.
I simply did some provocation.On first degree I think Kahneman succeeded in provoking our way of looking at truth...and made us aware..of various value traps...He was quite honest in his interview on CNN in answering very subtle questions of lady anchor..
Well thanks MateoBeach taking us on a walk along the beach with wave noise...
one may say..even
tat tvam asi is a noise of Adi Shankra...a brilliant kid who died so young...but left so much noise ...
Excellent post containing pertinent advice! Thank you!
One thing--sometimes taking a step away, giving a bit of time to take a objective view, if possible, rather than allow the subjective influence our decisions.
Yes that is surely an effective solution too. As long as one is flexible or humble enough to take a fresh view. Second and third opinions also effective. But the “standard” can be rigid too, and slow to evolve as the best available information leaps ahead, it lags behind. ( the fiasco around not doing PSA testing being an example). And doctors justifying: “ I do it this way because that is what I was taught ( long ago).” Is petrificación, not maintaining the optimal as the standard .
Interesting post but I'm not sure it's fully applicable to advanced prostate cancer, in that we know there are a lot of unknowns and once one gets past SOC (like me) it becomes trial and error. I'm quite aware of some things we don't know when making treatment decisions. For example, I have genetic test results, but I also know that cancer is usually heterogeneous so does that genetic test represent a majority of my cancer or just a fraction?
LearnAll made a great point about applying the SOC to all patients regardless of individual differences, but generally we don't have the information we need to tailor treatment to individuals, yet.
Despite all the cries of "Big Pharma wants profits!", let us not forget that the health insurance industry is sizable and has a history of funding studies that look for areas of overtreatment. For example, there is a study underway comparing Xgeva every 12 weeks vs every 4 weeks. The study will pay for itself if 12 week dosing is found to be equally effective. They've already established that side effects are significantly less.
Tom...We both started on our PCa journey almost at the same time in 2019. Initially both of us responded well to ADT. But from there in about a years time our paths started diverging.You discovered that you had a bunch of NE cells in your PCa which started multiplying furiously once regular androgen dependent cells were killed by ADT.
On the other hand, I was somewhat fortunate as my NE biomarkers told me early on that I hardly have any NE cells. Now, if I recall correctly, In first year ,Your Doctor never tested your blood for Chromogranin A, Neuron specific Enolase, Synaptophysin or even LDH.
My Onco also brushed aside my request for these tests. So I took a bunch of money out of my savings account and paid out of pocket for these markers and monitored them every month. For me it was important to know what I am dealing with..."Dove or Vulture"
In second year of our journey, you were tested for LDH finally and it was elevated.
What would have been outcome if you were tested for all these specific biomarkers in first month of diagnosis. I believe you would have nipped in the bud the NE part of your PCa.
It took a fracture of bone for your doctor to see that you have Lytic type bone lesions mixed with blastic type. A simple X Ray early on of your bones could have caught lytic bone lesion. Here also, My Onco said that I do not need X Ray as nothing will be visible on X Ray.
So here, The rebel me went , paid out of pocket and got X Rays and found out that I did not have any lytic lesion. Those $ 120 were worth spent to have peace of mind. Lastly, I was told to be on Xgeva infusions because it is "standard of care" I refused informed consent and went straigt to a private imaging center, paid $80 for a DEXA scan which showed normal Bone Density. Putting data in FRAX calculator, It was clear that my fracture risk is not higher than a 30year old healthy men. Gave a copy to Doc and I was allowed to go without Xgeva. This is over 2 years without any bone infusion.
The purpose of my this long explanation is that most of us have no clue about what is not being done in our treatment process and what is being done unnecessarily in the name of SOC. We all need to acquire as much knowledge about our disease as possible to defend ourselves and get the best care we deserve.
BTW, thank you for motivating me with your walks/run in first year. I have learned from you how to take long walk and long run. There is no day when I do not finish my 5 mile walk/jog.
Actually, I had a CT scan at initial diagnosis that showed lytic lesions. The scan was not triggered by a bone fracture.
I knew nothing at diagnosis. I have wondered "what if" my neuroendocrine cancer was detected earlier, and have come to two conclusions: 1) it probably would have avoided the need for a stent, and 2) it would have resulted on me going back on disability sooner, and possibly would have stopped me from running my half marathon. A lot of good things happened while neuroendocrine cancer was developing in my bladder. Finding out about it earlier would have meant going on platinum chemo sooner and missing out on those things due to the harsh side effects.
I have now reached the point where it is difficult to acquire more knowledge because I'm beyond SOC, and the number of patients alive and doing relatively well after failure of platinum chemo is teeny tiny. I have a very limited amount of time where I'm functional and not suffering chemo side effects. I now prefer to use that time living life than trying to dig through thousands of potential studies looking for one that might be a match for me. I'll leave it to the doctors at Dana Farber to match me to a potential study when I need a change of treatment.
5 miles a day is an impressive accomplishment. That works out to 35 miles a week, which is about the highest I've ever done in a week, excepting a few 40 miles weeks leading up to my marathon back in 2011. Currently due to side effects of chemo, covid vaccine, and unexplained pains, I'm lucky if I can get 5 miles in a week. Sigh.
Tom..It was inspiration from you that got me in this habit of walking 5 miles every day. I was impressed with your "Tom In Motion" blog posts and that motivated me.Lase week I finished 34.86 miles to be precise ,according to my FitBit data.
I wish you success in current treatment and hope we will enjoy your posts for many years to come.
You're in Florida if I remember correctly. I just read about a mouse study that showed mice kept in an 83 degree environment had better cancer outcomes than mice kept in a 72 degree environment. Glad to have inspired you though I must give a shout out to dockam and other running cancer patients that inspired me first.
I too hope to be blogging for many years to come. I've got this odd optimism that my cancer is so aggressive it just might burn itself out. My recent CT scans don't say anything about my prostate which started this whole thing, so it seems my mother ship has been shut down
Interesting, but I'm not sure why medicine would be different than any other field. In establishing a consensus, social effects come into play. That's why committees always decide on the low risk, least-threatening political recommendation and throw out opinions far from the median. That's why Economists' forecasts cluster around a middle-of-the-road view. Nobody wants to be wrong all alone. If they're wrong they'd rather be wrong together. Perhaps this is why SOC moves so slowly. New information is heavily discounted in favor of the more comfortable and career-safe.
Very interesting ..A scripture comes to mind which can be found at Jeremiah 10 and verse 23....’.it does not belong to man who is walking even to direct his step’ .
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Tomotherapy side effects?
Web md results on supplements for prostate cancer. 
Why we cancer: food for thought?
Boring! (In a good way.) 
Follow up at Duke !!
