"Action in the face of uncertainty" by Dave deBronkart

PhillieG
PhillieG Member Posts: 4,866 Member
A Good Read From e-patient Dave deBronkart:
"Science seeks certainty. The problem in medicine is, the body is complex and our knowledge is incomplete. People who want certainty – physicians or patients – are kidding themselves. And if we expect docs to be perfect, it’s a setup for dysfunction.

Sometimes I hear of patients who believe their physicians dissed a proposed or experimental treatment that’s not understood. (I’m not endorsing wacky treatments here – I’m only talking about uncertainty.) Yet, we’ve always had remedies whose actions aren’t understood; we just know they work. Even aspirin was used for a century without understanding it. And here’s a line I read today:

“Should I refuse my dinner because I don’t understand the digestive system?”

It’s by Oliver Heaviside (1850-1925), about whom Wikipedia says, “Although at odds with the scientific establishment for most of his life, Heaviside changed the face of mathematics and science for years to come.”

The quote is in the Pulitzer Prize winning book The Emperor of All Maladies: A Biography of Cancer, by Siddhartha Mukherjee MD. Emperor is cancer’s “whodunnit” story, centuries of efforts to understand it and treat it. And not in that order."

Full article can be found here
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Comments

  • Buckwirth
    Buckwirth Member Posts: 1,258 Member
    The book
    The Emperor of All Maladies is available as a Kindle edition.

    You do not need a Kindle to read these. Amazon has made software available to read Kindle books on PCs, Macs, iPhones, iPads, Android devices and more. Plus, when using the Kindle readers, you can start the book on one device (say your home computer) and continue it right where you left off on another (your iPhone while waiting in the doctors office).

    Books are often available the same day as hardcover editions, and about 1/2 the price (the Kindle edition of this book is $9.99, the hardcover is $16.65).

    Back to Emperor: This was a GREAT read! You will learn more about cancer and how the thinking about this disease has changed through time than from any other book.
  • PhillieG
    PhillieG Member Posts: 4,866 Member
    Buckwirth said:

    The book
    The Emperor of All Maladies is available as a Kindle edition.

    You do not need a Kindle to read these. Amazon has made software available to read Kindle books on PCs, Macs, iPhones, iPads, Android devices and more. Plus, when using the Kindle readers, you can start the book on one device (say your home computer) and continue it right where you left off on another (your iPhone while waiting in the doctors office).

    Books are often available the same day as hardcover editions, and about 1/2 the price (the Kindle edition of this book is $9.99, the hardcover is $16.65).

    Back to Emperor: This was a GREAT read! You will learn more about cancer and how the thinking about this disease has changed through time than from any other book.

    Interview with the Author
    I posted this a while back.
    LINK

    I liked this comment "The problem in medicine is, the body is complex and our knowledge is incomplete. People who want certainty – physicians or patients – are kidding themselves. And if we expect docs to be perfect, it’s a setup for dysfunction."
    It really rings true I believe
  • Buckwirth
    Buckwirth Member Posts: 1,258 Member
    PhillieG said:

    Interview with the Author
    I posted this a while back.
    LINK

    I liked this comment "The problem in medicine is, the body is complex and our knowledge is incomplete. People who want certainty – physicians or patients – are kidding themselves. And if we expect docs to be perfect, it’s a setup for dysfunction."
    It really rings true I believe

    Very true
    Our bodies are a complex system, all working together, much like global climate. Making a small change in one part, however beneficial, can have unintended consequences in another.

    And just because something sounds like it makes sense, does not mean that it is actually the right thing to do.
  • Kimo Sabe
    Kimo Sabe Member Posts: 64
    Buckwirth said:

    Very true
    Our bodies are a complex system, all working together, much like global climate. Making a small change in one part, however beneficial, can have unintended consequences in another.

    And just because something sounds like it makes sense, does not mean that it is actually the right thing to do.

    Cancer Reads
    What great stimulating posts. I have my reading list updated. I have wondered about a reading list on the subject of cancer from the micro to the macro, and including psychosocial, cultural, and spiritual aspects. Maybe such a list exists somewhere. Below is quote from Marshall McLuhan in 1964 discussing the media. It touches close to some of the issues above.

    "Literate man, once having accepted an analytic technology of fragmentation, is not nearly so accessible to cosmic patterns as tribal man. He prefers separateness and compartmented spaces, rather than the open cosmos. He becomes less inclined to accept his body as a model of the universe, or to see his house-or any other of the media of communication, for that matter-as a ritual extension of his body.

    Once men have adopted the visual dynamic of the phonetic alphabet, they begin to lose the tribal man's obsession with cosmic order and ritual as recurrent in the physical organs and their social extension. Indifference to the cosmic, however, fosters intense concentration on minute segments and specialist tasks, which is the unique strength of Western man. For the specialist is one who never makes small mistakes while moving toward the grand fallacy."   Marshall McLuhan, Understanding The Media 1964                        

    Norm
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    it starts with a step, healing action that is
    Assuming the magic bullet exists.
    It therefore exists outside current medical treatment system.
    Doctors and scientists are looking at the problem bottomup approach. Ha ha!

    My approach is top down brute force, referring to the math technique to solve calculus equations.
    Maybe their are a few magic bullets and they all help

    At present I believe the magic bullet is within. You need one for your brain mind and one for your heart the sole.

    Uncertainty is awesome, it implies hope. Where none exists if you have been given only 10 seconds to live, well I can hold my breathe for 3 minutes so that's another amount of time. I know full well this is not crc's normal preferred way of dieing. If I have a choice I will deny this bastaard disease it's last battle and I will die peacefully with love at my choosing. That's my intention and it's clearly understood.

    Crc may win the war but I will have the last laugh. Did you know laughter is healing?
    Another Ian gawler magic bullet. But in my case I don't think crc has a chance in hell. I get enormous joy knowing it's been fried with radio, poisoned with chemo, attacked by my killer t cells, cut to pieces and stored in a bottle of formaldehyde for eternity. Any of its children left floating around inside have got nowhere safe to hide.

    Positive actions I have faith in are my magic bullets, the beauty of uncertainty for me reflects the essence of life. Every time shiit happens to me or my family I honestly say that's life. Being lost at sea, getting crc, getting malaria, living in a dump, or finding my dead dad when I was 14.

    Uncertainty in life thats for sure, even in death as my faith is weak.
    The only certainty is the fact my body Will die one day, until that point uncertainty is the essence of life and ironically even after death uncertainty.

    Hugs,
    Pete
  • epatientdave
    epatientdave Member Posts: 4
    Thanks!
    Once again my Google Alert brings me a heartwarming post here. Thanks again, Phil.
  • Kathleen808
    Kathleen808 Member Posts: 2,342 Member
    Kimo Sabe said:

    Cancer Reads
    What great stimulating posts. I have my reading list updated. I have wondered about a reading list on the subject of cancer from the micro to the macro, and including psychosocial, cultural, and spiritual aspects. Maybe such a list exists somewhere. Below is quote from Marshall McLuhan in 1964 discussing the media. It touches close to some of the issues above.

    "Literate man, once having accepted an analytic technology of fragmentation, is not nearly so accessible to cosmic patterns as tribal man. He prefers separateness and compartmented spaces, rather than the open cosmos. He becomes less inclined to accept his body as a model of the universe, or to see his house-or any other of the media of communication, for that matter-as a ritual extension of his body.

    Once men have adopted the visual dynamic of the phonetic alphabet, they begin to lose the tribal man's obsession with cosmic order and ritual as recurrent in the physical organs and their social extension. Indifference to the cosmic, however, fosters intense concentration on minute segments and specialist tasks, which is the unique strength of Western man. For the specialist is one who never makes small mistakes while moving toward the grand fallacy."   Marshall McLuhan, Understanding The Media 1964                        

    Norm

    Norm
    Norm,
    That is an incredible quote from Marshall McLuhan. It really makes me think as a teacher and a wife trying to be a good partner to my husband as he fights this disease.
    Also, living in Hawaii we have options other than just the Western way of thinking and understanding our bodies and the world we live in.
    Thank you for sharing.

    Aloha,
    Kathleen
  • Kathleen808
    Kathleen808 Member Posts: 2,342 Member

    Thanks!
    Once again my Google Alert brings me a heartwarming post here. Thanks again, Phil.

    Dave
    Dave,
    It is great to have you join us.

    Aloha,
    Kathleen
  • Kathleen808
    Kathleen808 Member Posts: 2,342 Member
    Buckwirth said:

    The book
    The Emperor of All Maladies is available as a Kindle edition.

    You do not need a Kindle to read these. Amazon has made software available to read Kindle books on PCs, Macs, iPhones, iPads, Android devices and more. Plus, when using the Kindle readers, you can start the book on one device (say your home computer) and continue it right where you left off on another (your iPhone while waiting in the doctors office).

    Books are often available the same day as hardcover editions, and about 1/2 the price (the Kindle edition of this book is $9.99, the hardcover is $16.65).

    Back to Emperor: This was a GREAT read! You will learn more about cancer and how the thinking about this disease has changed through time than from any other book.

    Great
    Thanks Buckwirth. I just downloaded it to my iPad. Thanks for the link, it made it easy.

    Aloha,
    Kathleen
  • Kathleen808
    Kathleen808 Member Posts: 2,342 Member
    Fabulous
    Fabulous! Thanks Phil.

    Aloha,
    Kathleen
  • PhillieG
    PhillieG Member Posts: 4,866 Member
    Kimo Sabe said:

    Cancer Reads
    What great stimulating posts. I have my reading list updated. I have wondered about a reading list on the subject of cancer from the micro to the macro, and including psychosocial, cultural, and spiritual aspects. Maybe such a list exists somewhere. Below is quote from Marshall McLuhan in 1964 discussing the media. It touches close to some of the issues above.

    "Literate man, once having accepted an analytic technology of fragmentation, is not nearly so accessible to cosmic patterns as tribal man. He prefers separateness and compartmented spaces, rather than the open cosmos. He becomes less inclined to accept his body as a model of the universe, or to see his house-or any other of the media of communication, for that matter-as a ritual extension of his body.

    Once men have adopted the visual dynamic of the phonetic alphabet, they begin to lose the tribal man's obsession with cosmic order and ritual as recurrent in the physical organs and their social extension. Indifference to the cosmic, however, fosters intense concentration on minute segments and specialist tasks, which is the unique strength of Western man. For the specialist is one who never makes small mistakes while moving toward the grand fallacy."   Marshall McLuhan, Understanding The Media 1964                        

    Norm

    Thanks for the post Norm




  • laurettas
    laurettas Member Posts: 372
    All right, all right
    I will get the book. I may not pick up on hints or suggestions the first time but after a dozen or so repetitions, I will SOMETIMES actually follow them!

    Love this discussion. I have many questions about cancer in general. Would anyone be interested in discussing this topic? For example, I am puzzled about cancer's capacity to form blood vessels. Do cells of the same type that are not cancerous have the capacity to do that--other than immune system cells, that is? If not how does cancer develop that capacity? Sounds almost like an intelligence is sensing a need and providing a solution but I really don't think cancer has a brain of its own. Does it?
  • Buckwirth
    Buckwirth Member Posts: 1,258 Member
    laurettas said:

    All right, all right
    I will get the book. I may not pick up on hints or suggestions the first time but after a dozen or so repetitions, I will SOMETIMES actually follow them!

    Love this discussion. I have many questions about cancer in general. Would anyone be interested in discussing this topic? For example, I am puzzled about cancer's capacity to form blood vessels. Do cells of the same type that are not cancerous have the capacity to do that--other than immune system cells, that is? If not how does cancer develop that capacity? Sounds almost like an intelligence is sensing a need and providing a solution but I really don't think cancer has a brain of its own. Does it?

    Not quite intelligence
    Here is the Wiki entry on angiogenesis in tumors:

    Wikipedia Angiogenesis

    Cancer is basically a cell with bad DNA. A lot is made of the failure of the immune response, but the real culprit is the failure of DNA repair (which, as I understand it, is different from the immune response). Every cell contains all of the DNA needed to replicate you in your entirety, so a faulty cell can access all of the available signals to feed itself.

    Recently, we discussed malaria (Pete got it) and I looked it up. The Malaria virus avoids the immune response by hiding inside the cell wall. As it moves through the blood, the immune system sees only a healthy cell, with no detection of what is inside. In the same way, cancer cells are seen by the immune system no differently than regular, healthy cells (in other words, self).

    Most of the current immune therapy protocols being studied are designed to send a viral load into the tumor cell, and let the virus trigger an immune response. The hope is, your body reacts to and kills the virus, plus the infected cell.

    It is a complicated subject, and the immune system itself can be a hazard to your health (and can get cancer. See Lymphoma and Leukemia). There are a couple of people on this forum who seem to have a decent understanding, and on the Colon Talk forum there is at least one member, Galen, who seems to have an in-depth knowledge. I like to think I understand it, and can explain some concepts, but mostly I think I have a lot to learn here.
  • PhillieG
    PhillieG Member Posts: 4,866 Member

    Thanks!
    Once again my Google Alert brings me a heartwarming post here. Thanks again, Phil.

    No, thank YOU Dave
    I always enjoy your posts/comments on FB and wherever else I read them. They're always interesting.
    Thanks for checking in over here...
    -p
  • laurettas
    laurettas Member Posts: 372
    Buckwirth said:

    Not quite intelligence
    Here is the Wiki entry on angiogenesis in tumors:

    Wikipedia Angiogenesis

    Cancer is basically a cell with bad DNA. A lot is made of the failure of the immune response, but the real culprit is the failure of DNA repair (which, as I understand it, is different from the immune response). Every cell contains all of the DNA needed to replicate you in your entirety, so a faulty cell can access all of the available signals to feed itself.

    Recently, we discussed malaria (Pete got it) and I looked it up. The Malaria virus avoids the immune response by hiding inside the cell wall. As it moves through the blood, the immune system sees only a healthy cell, with no detection of what is inside. In the same way, cancer cells are seen by the immune system no differently than regular, healthy cells (in other words, self).

    Most of the current immune therapy protocols being studied are designed to send a viral load into the tumor cell, and let the virus trigger an immune response. The hope is, your body reacts to and kills the virus, plus the infected cell.

    It is a complicated subject, and the immune system itself can be a hazard to your health (and can get cancer. See Lymphoma and Leukemia). There are a couple of people on this forum who seem to have a decent understanding, and on the Colon Talk forum there is at least one member, Galen, who seems to have an in-depth knowledge. I like to think I understand it, and can explain some concepts, but mostly I think I have a lot to learn here.

    Lots to think about
    I read through the Wiki article and found it interesting that they have not been very successful in stimulating new blood vessel formation to treat heart disease. Must not know all of the details of how the process works. Also, that exercise can stimulate the growth of new blood vessels--would enjoy hearing the particulars of that as well.

    I wonder why the cancerous cells don't produce PKG? This whole thing is fascinating to me--how our body can turn into an enemy and our defense system doesn't even recognize it! I will talk with Gaelen about my questions. Would love to hear some more explanations about all of this.

    Have been following the vaccine/immune therapy developments. Some of them sound very hopeful. I guess Congress just approved another $2billion for cancer research so maybe some of these things can be developed without too many years passing.

    Enjoy your extra hour's sleep tonight!
  • buckeye2
    buckeye2 Member Posts: 428 Member
    I downloaded and am reading
    I downloaded and am reading the book now. It is surprisingly an easy read for a complex topic. Thanks for the recommendation. Lisa
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    laurettas said:

    Lots to think about
    I read through the Wiki article and found it interesting that they have not been very successful in stimulating new blood vessel formation to treat heart disease. Must not know all of the details of how the process works. Also, that exercise can stimulate the growth of new blood vessels--would enjoy hearing the particulars of that as well.

    I wonder why the cancerous cells don't produce PKG? This whole thing is fascinating to me--how our body can turn into an enemy and our defense system doesn't even recognize it! I will talk with Gaelen about my questions. Would love to hear some more explanations about all of this.

    Have been following the vaccine/immune therapy developments. Some of them sound very hopeful. I guess Congress just approved another $2billion for cancer research so maybe some of these things can be developed without too many years passing.

    Enjoy your extra hour's sleep tonight!

    learnt about reversing heart disease today
    heard this before but as you asked and i saw it here goes my understanding.
    remarkable success with vegan diets and unblocking clogged arteries.
    see page`128 chart 5.4 the china syndrome. for details .

    hugs,
    pete

    ps the vegan diet i am struggling to follow also prevents recurrence and most importantly mitagates the risk of secondary cancers due to chemo / radio imho.

    hugs,
    pete
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    Buckwirth said:

    Not quite intelligence
    Here is the Wiki entry on angiogenesis in tumors:

    Wikipedia Angiogenesis

    Cancer is basically a cell with bad DNA. A lot is made of the failure of the immune response, but the real culprit is the failure of DNA repair (which, as I understand it, is different from the immune response). Every cell contains all of the DNA needed to replicate you in your entirety, so a faulty cell can access all of the available signals to feed itself.

    Recently, we discussed malaria (Pete got it) and I looked it up. The Malaria virus avoids the immune response by hiding inside the cell wall. As it moves through the blood, the immune system sees only a healthy cell, with no detection of what is inside. In the same way, cancer cells are seen by the immune system no differently than regular, healthy cells (in other words, self).

    Most of the current immune therapy protocols being studied are designed to send a viral load into the tumor cell, and let the virus trigger an immune response. The hope is, your body reacts to and kills the virus, plus the infected cell.

    It is a complicated subject, and the immune system itself can be a hazard to your health (and can get cancer. See Lymphoma and Leukemia). There are a couple of people on this forum who seem to have a decent understanding, and on the Colon Talk forum there is at least one member, Galen, who seems to have an in-depth knowledge. I like to think I understand it, and can explain some concepts, but mostly I think I have a lot to learn here.

    was studying dna repair today at seminar
    just sharing what i accept based on my research.
    from super immunity by joel fuhrman page 62..
    the changes over time that lead to cancer in a cell can be summarised
    more green vegetables --less dna methylation----lower risk of cancer

    or expressed as

    less green vegetables--more dna methylation---higher risk of cancer
    i accept joel's research and reasoning i have read the book and it gives me peace.
    not wanting to argue its merits, just i ate a raw brussel sprout today and it felt good.
    the goal for my dietary intervention is cruciferous

    the magic bullet we want is not in the laboratory, its already been found and exists in the grocery shop imho. we can all express our beliefs and what they are based on here. i respect everyones right to form their own opinions and voice them here. support or disagreement is welcome.

    hugs,
    pete

    ps yes i am a tree hugging, vegan hippie. the only thing missing is the drugs.
    chemo does not count alas! the morphine did have its highs though!!!!!!!!!!!
  • tanstaafl
    tanstaafl Member Posts: 1,313 Member
    attaboy Phil
    Heaviside's challenge (should I refuse...) is a great reality check for medicine that has spiraled out of control on pharma gatekeeping with restraints on trade, competition and speech, as well as the expensive FDA phase III tests only and NDA parochialism on old consumer items.

    Thanks, for the terrific post Phil.
  • laurettas
    laurettas Member Posts: 372

    was studying dna repair today at seminar
    just sharing what i accept based on my research.
    from super immunity by joel fuhrman page 62..
    the changes over time that lead to cancer in a cell can be summarised
    more green vegetables --less dna methylation----lower risk of cancer

    or expressed as

    less green vegetables--more dna methylation---higher risk of cancer
    i accept joel's research and reasoning i have read the book and it gives me peace.
    not wanting to argue its merits, just i ate a raw brussel sprout today and it felt good.
    the goal for my dietary intervention is cruciferous

    the magic bullet we want is not in the laboratory, its already been found and exists in the grocery shop imho. we can all express our beliefs and what they are based on here. i respect everyones right to form their own opinions and voice them here. support or disagreement is welcome.

    hugs,
    pete

    ps yes i am a tree hugging, vegan hippie. the only thing missing is the drugs.
    chemo does not count alas! the morphine did have its highs though!!!!!!!!!!!

    Here it comes, Pete!
    You said that you welcome disagreement. OK, this is what goes through my mind. Eating vegetables is so much healthier for you--why then do vegetarians have a higher colon cancer rate than non-vegetarians? Why are so many on these sites so confused as to why they got cancer when they ate so healthily? Why do I not have a polyp when I have eaten a lot of meat--home-grown, however--and my father had colon cancer and he doesn't like meat--ate mostly chicken.

    Exercise cut your cancer risk by a huge amount. Why then are so many people who post on these cancer sites runners and very active people when others like myself and my mother and many other relatives who are not very active not getting cancer? I see way too many contradictions to all of these maxims to be comfortable in saying that if I do X and Y I will be fine. I personally think we have a lot more investigating into the causes of cancer before we can relax and think that we have the answers.