inkwell.vue.394 : Carole Berlin, "What You Should Know Before Your Next Mammogram"
permalink #101 of 141: David Albert (aslan) Sun 24 Oct 10 04:16
    
>But not all information is equal.

Absolutely.  Which speaks, I think, to making sure YOU get to see the
best experts in the field when you need them.  Not just some random
oncologist who goes by the papers published 20 years ago, but the ones
going to every conference, reading every paper, and who can really tell
you what the best state of current knowledge is.

Not every patient has access to those best experts in the field.  My
hope is that somehow everyone will -- either by creating more "best
experts", or by harnessing the power of quick opinions via the
Internet, or in some other fashion that I can't currently fathom.

Because really what is unconscionable here is the number of patients
around the country being given sub-optimal treatments simply because
the knowledge of what is best is not spreading fast enough.

The same might be true in all fields, but if your plumber doesn't know
the most energy-efficient way to insulate your pipes, that is rarely a
matter of life and death.
  
inkwell.vue.394 : Carole Berlin, "What You Should Know Before Your Next Mammogram"
permalink #102 of 141: Pat Adams (scarlet) Sun 24 Oct 10 17:04
    
How do you get the inside skinny on who's the best doctor? I mean, some 
kind of objective factual information, not just that one patient had a 
good experience with him/her?
  
inkwell.vue.394 : Carole Berlin, "What You Should Know Before Your Next Mammogram"
permalink #103 of 141: Carole Berlin (caroleberlin) Sun 24 Oct 10 22:35
    
#91
Michael,

Thanks for your quick response.  Apologies for the delay in mine.   

I’d written 
“
I have yet to see a study establishing fluoride’s safety for adults,
let alone small children.  If you've got one,please share it.
“

and so you did. Thanks. 
 
In hindsight, I should have said more about the kind or quality of
safety information I still hope to find. 

Fluoride is one of those issues in which politics, science, and
business are so intertwined that it's grown too big for a civilized
discussion on 'paper.'  I vote Let's not go there.

In fact, if you don't mind, I'd like to just agree to disagree about
the kind and quality of safety information on fluoride that's currently
out there.  

Those who believe the EPA's reports (and you might) will believe them.

<http://water.epa.gov/drink/contaminants/basicinformation/fluoride.cfm>


Those who believe Robert Carton (and I do) will believe him.  
<http://www.fluoridealert.org/carton-affidavit.htm>.  
  
inkwell.vue.394 : Carole Berlin, "What You Should Know Before Your Next Mammogram"
permalink #104 of 141: Carole Berlin (caroleberlin) Sun 24 Oct 10 23:26
    
98

Thanks, Julie.  

I wish I'd been here during the e-Patient Dave's discussion.  I've got
a copy of his book here that I've hardly touched, but the little I've
read so far makes me wish I'd been here during his visit. 

You said
"
often the patients knew more than the
doctors because they had more time to do the research
"

And there's the rub.  The hard part for many of us is getting a
physician to read the material.

A psychologist I know claims that the physicians who are the most
secure in themselves are the ones who not only don't mind when a
patient brings in new information, they relish it, while the rest
dismiss the information out of hand.

I think she's on to something.  
 
  
inkwell.vue.394 : Carole Berlin, "What You Should Know Before Your Next Mammogram"
permalink #105 of 141: Gary Greenberg (gberg) Mon 25 Oct 10 07:13
    
I've been reading this discussion with great interest. I think the
debate that is emerging here between Carole and <debunix> and <divinea>
among others is really fascinating and ultimately pertinent for all of
us, breasted or not, with or without cancer. 

The reason that people become e-patients, scour the internet for
information about their diseases, and then challenge their doctors is
not only that they are made gullible by hope and desperation, although
many times they are. It's that they have run up against the limitations
of medicine. Their symptoms didn't add up to a known disease. The
diagnoses that were offered turned out to be inaccurate. The side
effects of the medications were intolerable. The treatments that were
supposed to work did not, and for no particular reason. They're
suffering or maybe even dying and the people vested with the power and
authority to heal them have not succeeded, and at that point, they
start looking elsewhere. Who can blame them?

Now I'm not a doctor, at least not that kind of doctor, but I've been
working in the health care field for nearly thirty years with all sorts
of patients and their doctors. I've also written extensively in
magazines and books about medicine, which means I've read an awful lot
of research and talked to doctors from the most orthodox to the most
quacky. I've been a subject in their clinical trials, gotten shot up
with their potions in the name of science,  sat in on their office
visits, and peered over their shoulders while they performed surgery.
I've taken them out to dinner, stayed at their houses, flirted with
their wives. They've twisted my arm to get their message out, caught me
in their crossfire (and sometimes their crosshairs), even once in a
while tried sucking up to me. So I['ve seen them at their best and at
their worst, and there's one thing that almost all of them have in
common. They have a very hard time talking about their limitations with
people from outside their field. 

That's not to say they are, as a group, arrogant. Some are, orf
course, but most of them have seen enough suffering and death to
understand just how outmatched they are by the vagaries of our bodies
and all that the world subjects them to. When they think they are in
safe company, they tend to be realistic and sometimes even humble. But
when they are among patients, they tend not to be. 

I don't think this is in itself a bad thing. A major part of the
effectivenes of medical treatment is the placebo effect, and this
hinges on the doctor's authority, which is (nmostly unconsciously)
inculcated in medical school and cultivated in professional life. You
want your doctor to know what he or she is talking about, and when they
do their treatments tend to work better (aqt least they do in cases
where this question has been investigated) thatn when they don't. So in
a way we're all dependent on doctors' believing in themselves anqd
asserting that belief. 

But the quasi-mythical nature of doctors' authority creates a
significant disconnect between the medical industry and its customers. 
So, for instance, most doctors who know anything about the subject
will tell another doctor that the serotonin theory of depression is
fanciful at best, and increasingly unlikely as an explanation of why
antidepressants work, but they will go back to their patients and tell
them that depression is a chemical imbalance that Zoloft rectifies.
Happens every day, many times a day. Most doctors will explain to the
families of brain dead patients that their loved one is truly dead,
even if he or she is breathing and has a beating heart, while among
colleagues, or if pressed, they will acknowledge that they can't really
know any more than that the patient is irreversibly destroyed and will
die (stop breathing) when the respirator is shut off. And so on.

Where this disconnect becomes really vexing is in a discussion like
this one, where a person introducing evidence from the margins has to
defend herself against the appearance of flakiness, while the doctors
have to defend their profession against charges that they willfully
withhold effective treatments or overlook sensitive tests like
thermograms or iodine swabs. 

But things are not that simple, and in a way both sides are correct.
Medical economics have a great deal to do with what we consider to be
legitimate treatments. But even m,ore important, what gets overlooked
is the fact that medical knowledge, by and large, is statistical
knowledge. Which means that our certainties about disease and healing 
derive from measuring probability in populations, not certainty in
individuals. Here again, doctors know this. They have it drummed into
them in medical school, and nearly every peer-reviewed original
research paper (or at least every controlled trial) is an exercise in
using statistics to determine the probability that a given treatment's
effectiveness is due to something other than random chance. That's all.
And, as one of the eaqrliest statisticians warned, it's way too easy
for experimenters to forget this, and to forget the fact that having to
resort to statistical methods in the first place "shows that he has
failed to attain the very object of his experiment." If the treatment
under study worked in virtually every case, you wouldn't need an
experiment to prove it. 

When it comes to a complexly determined, heterogenous disease like
breast cancer (which is no doubt many different diseases that surface
in similar ways) or, say, multiple sclerosis, this means that doctors
face severe epistemological limitations. The statistical probability
model has gotten pretty sophisticated, what with computers and all, but
even so, you have to choose some variables to study, and some
interactions, and you can't study all of them. Or their interactions
are too idiosyncratic to show up in populations. Or a treatment that
works in a small minority of individuals is deemed not to work (because
at a population level it does not) or, more often, is considered
unprofitable. And so on. The point is (and I;'m sorry to be so long
getting to it) that when it comes to individual disease and response to
it, medicine is really ill-suited to understand and treat it. Which is
why it is silly to dismiss somethign like iodine swabs as silly. It
may not be statistically valid, but that does not mean it does not
work. It just means that in a given pouplation, it is improbable that
it has an effect beytond that of random chance. Same goes for worries
about fluoride treatment. Does anyone really know why the incidence of
various cancers is on the rise? Can anyone think of a reason to say
that it can't be the fact that the background level of all ssorts of
chemicals, like fluoride, has increased? Can anyone assert that the
current research model is well suited to asking this kind of question,
which involves idiosyncratic responses to pooorly understood chemical
interactions? Iodine swabs may be silly, but forgetting these
limitations is aqt least equally so. 

What people like Carole are doing, it seems to me is trying to
reintroduce a kind of complexity to our thinking about disease that got
lost in the transormation of medicine after the discovery of magic
bullet treatments, a development that had the effect of turning every
disease into a target, even the ones that were poorly suited to it.
Following that model, we have done well with some diseases, but the low
hanging fruit (infectious disease, type 1 diabetes, hypertension) may
have all been picked. We may, in the case of something like breast
cancer, be searching for featehrs with a magnet, and that ain't gonna
work real well.

REading this discussion, and an earlier one, I can see all sorts of
limitations, scientific and otherwise, in some of what epatients are
coming up with. But it is very hard to say that they are any more or
less troublesome than the lmitations that medicine itself is saddled
with--although it is pretty clear which limitations most doctors would
prefer to focus on.
  
inkwell.vue.394 : Carole Berlin, "What You Should Know Before Your Next Mammogram"
permalink #106 of 141: David Albert (aslan) Mon 25 Oct 10 07:41
    
> It
> may not be statistically valid, but that does not mean it does not
> work. It just means that in a given pouplation, it is improbable
that
> it has an effect beytond that of random chance.

Isn't that pretty much the definition of "does not work"?
  
inkwell.vue.394 : Carole Berlin, "What You Should Know Before Your Next Mammogram"
permalink #107 of 141: Gary Greenberg (gberg) Mon 25 Oct 10 08:05
    
Well, yes, but that's not because of anything Noah Webster said. It's
because we've gotten used to the medical definition of "what does not
work." But it is not the same thing as saying it doesn't work at any
time for anyone. Even more important, it's really not the same thing as
saying what DOES work. At best, statistical methods give you the
probability that something doesn't not work.
  
inkwell.vue.394 : Carole Berlin, "What You Should Know Before Your Next Mammogram"
permalink #108 of 141: it's all about the margins (gail) Mon 25 Oct 10 08:44
    
I lost someone very close to me recently from pancreatic cancer.  He
was a dentist, a pragmatic man with a good scientific background.  The
disease was far advanced when diagnosed, something very common with the
pancreas. Several things struck me during the six months from his
diagnosis to his death.

He had a period of evident remission for a while when he added in
something that he didn't name, but described as "An experimental large
animal drug from a vet." I'm thinking, "there have not been large
randomized clinical trials on horses or cattle with pancreatic cancer,
so this is purely hunch-based."  But we wanted random chance to smile
on him!

So I didn't say it, of course.  

At the point where you have been diagnosed with a nearly-always fatal
disease, you are not trying to fit into the statistics, but to beat
them.  You don't want to be part of solid statistics, you want to be
one of the dots on the chart that does not fall into the expected
pattern.  And some people will be.  Why not you?  Why not the ones you
love?

He did better for a month, all the markers fell, and then the mystery
vet drug stopped working.  Perhaps it was a passing gift of a little
more time and hope, and it triggered a little placebo effect for a
while. Good days are precious at that point in time. Even if he'd been
fine for years that would have been anecdotal. Useful only for him,
perhaps, or perhaps a pure coincidence as his body cured itself. That
would not have been proof.

For those who don't fit nicely into authoritarian-based comfort zones,
the confidence and authority of the doctor may not convey as much
placebo magic as the outsider information.  Some are much more
impressed by the secret potion from an irreverent, outsider source. 
That's going to sometimes include solid scientific evidence that has
not yet been studied in a big, well-designed, credible clinical trial. 
It is sure to bring baggage, too.  Some of the old, ridiculous cancer
"cures" that were debunked as money-grubbing quackery long ago are
still part of the alternative therapy culture. 

Wikipedia has become a battle ground for some of these assertions.  An
interesting example is http://en.wikipedia.org/wiki/Shark_cartilage
which currently notes that the whole industry of selling shark
cartilage pills is based on the lie that sharks do not get cancer, but
the industry is booming.  It's not a healing myth for many threatened
species of sharks -- and that's horrific to me.  It's making a buck for
supplement manufacturers and elite health food stores which stock the
pills that sell. Shark cartilage is symbolic for believing shoddy
"science" rather than solid science.  If it started to become popular
as prevention rather than treatment, I'd be scandalized.   But if my
cousin had decided to try it, would I have told him it was a waste of
his few remaining days?   Of course not.

I see ads for Cancer Centers of America on the TV -- they run a moving
testimonial from a pancreatic cancer survivor whose cancer just went
away after getting a holistic and positive course of treatment of some
kind there, running from a diagnosing doctor who coldly told her how
many weeks she had to live.  That ad is an indictment of "medical
hexing," as giving time left without any discussion of choices or
beating the odds is sometimes called.  

I don't know about that organization beyond their tv ad campaign, but
I will guess their services are costly.  I think that's the only
(though sometimes significant) harm of saying you don't have an
expiration data and we are going to try everything for you, proven and
unproven, from all traditions and sciences.

However, I don't feel the same way about prevention and diagnostics.
Public policy should follow mainstream, statistically validated best
practices.  New approaches should be evaluated to see how they fit in. 
And those who have "joined the club" are justified and often wise to
look to overlooked information, spiritual and traditional approaches if
they believe in them, and in the amazing life-enhancing effect of
being in a group who cares about them.  I think the e-patient movement
is most exciting on that front, though finding promising treatments and
pushing for real clinical trials is a wonderful incidental role as
well.
  
inkwell.vue.394 : Carole Berlin, "What You Should Know Before Your Next Mammogram"
permalink #109 of 141: It's all about the margins (gail) Mon 25 Oct 10 14:36
    
Sorry for making a statement instead of a question.  Carole, I'm
appreciating the discussion here. I guess I do have another question. 
Is anybody doing anything to collect the statistics on the outcomes of
the treatments and experiences of e-patients, and if not, do you think
that is a good idea that would fit into the e-patient ethos?
  
inkwell.vue.394 : Carole Berlin, "What You Should Know Before Your Next Mammogram"
permalink #110 of 141: paralyzed by a question like that (debunix) Mon 25 Oct 10 19:32
    
>Shark cartilage is symbolic for believing shoddy
"science" rather than solid science.  If it started to become popular
as prevention rather than treatment, I'd be scandalized.   But if my
cousin had decided to try it, would I have told him it was a waste of
his few remaining days?   

Terrible to destroy another species so cruelly in a futile exercise. 
  
inkwell.vue.394 : Carole Berlin, "What You Should Know Before Your Next Mammogram"
permalink #111 of 141: Carole Berlin (caroleberlin) Mon 25 Oct 10 23:05
    
Wow. I missed a lot when I hurt my eye. 
Doing my best to catch up. 
 
101, David

Your posts seem always to have so much behind them.  

"
>But not all information is equal.
Absolutely.  Which speaks, I think, to making sure YOU get to see the
best experts in the field when you need them.  Not just some random
oncologist who goes by the papers published 20 years ago, but the ones
going to every conference, reading every paper, and who can really tell
you what the best state of current knowledge is.
"

In fairness to oncologists, not too many of them are behind the times
any more.  They’re usually in shared practices, so there's someone else
to consult with.  And they follow a generally agreed-upon “standard of
care” from which they seldom depart. 

Their unwillingness to depart from the standard of care is perfectly
understandable. But for the patient with breast cancer who is not about
to do chemotherapy, the standard of care gets in the way when it's
adhered to so rigidly that there's no room for anything else. 

As to experts:

I think the first step is to find a local physician who is willing to
listen to expert advice from the PhD's who do the research. THEN you
find the expert.  
 
David Zava, PhD is an expert on the relationship between hormones and
hormone "driven" breast (ovarian, and prostate) cancer.  His highly
informative "What Your Doctor May Not Tell You About Breast Cancer"
co-written with John Lee, MD, is worth the read whether you've got
breast cancer or not. (It's got a lot to say to men, too, about
prostate cancer.)  He knows the workings of the relationship between
hormones and cancers in a way that few oncologists do.
 
Shortly after I joined the listserv in 1997, I learned about Zava's
work. Because my MD was willing to set up a three way phone call, that
conversation made a difference in what she was willing to prescribe. 
And that made all the difference in the world for me.   But the outcome
hinged on my local MD being willing to listen. 

The experts in every field are out there.  They're not that hard to
find, and I've yet to find one who was unwilling to talk to or email
the patient with a genuine interest in his/her work,  
  
inkwell.vue.394 : Carole Berlin, "What You Should Know Before Your Next Mammogram"
permalink #112 of 141: Carole Berlin (caroleberlin) Tue 26 Oct 10 00:18
    
#105

Wow.  Gary.  What a wonderful post.  
I, for one, appreciate the time you took to write it.

More to come on this.

 
  
inkwell.vue.394 : Carole Berlin, "What You Should Know Before Your Next Mammogram"
permalink #113 of 141: David Albert (aslan) Tue 26 Oct 10 07:45
    
> In fairness to oncologists, not too many of them are behind the
> times any more.  They’re usually in shared practices, so there's
> someone else to consult with.  And they follow a generally
> agreed-upon “standard of care” from which they seldom depart. 

That last is certainly true, in my experience.  But the first does not
follow.  The "standard of care", again in my experience, is often
behind the times as compared to the advice you can get from the best
experts in the field.
  
inkwell.vue.394 : Carole Berlin, "What You Should Know Before Your Next Mammogram"
permalink #114 of 141: Gary Greenberg (gberg) Tue 26 Oct 10 08:20
    
This is true. By the time standards of care are promulgated, which is
this huge bureaucratic nightmare process, the science has moved
forward. Plus standards of care tend to be conservative, not
necessarily by intent, but because they are the result of compromise.
  
inkwell.vue.394 : Carole Berlin, "What You Should Know Before Your Next Mammogram"
permalink #115 of 141: Gail Williams (gail) Tue 26 Oct 10 10:04
    
I knew a long-term survivor who most likely outlasted the
recommendations and knowledge of her perfectly decent, caring and
hard-working small town Sierra foothills oncologist by driving three
hours each way for care from a world-respected doc in San Francisco
0instead.  (She originally also drove ten hours away for a second
opinion in LA, too).  That insistence on those who are on the front
lines of research probably added 18 years to her life. That's not
insignificant to anybody.  The small town doc learned about what the
thought leaders liked best about the annual meeting in Antonio from
her, in addition to published accounts.

(I wanted to say to <debunix> that my remarks about not objecting to
even something as useless and hurtful to the larger world as shark
cartilage was not supposed to be prescriptive, but confessional.  I was
thinking of the context of the different standards of what works or
even just gives hope when you talk about a beloved individual rather
than public policy.  When I don't have a loved one suffering I can
decry such an industry, and I do, but in the hypothetical of a real
person's choices... that's hard. That's why I wonder how or if we will
ever get rid of all of the old, bad knowledge that is in the mix.)
  
inkwell.vue.394 : Carole Berlin, "What You Should Know Before Your Next Mammogram"
permalink #116 of 141: Gary Greenberg (gberg) Tue 26 Oct 10 12:47
    
Doctors don't mind using treatments that don't work in order to give
patients hope (or just to shut them up). I don't have the reference in
front of me, but there was a study a few years back in which docs
granted anonymity confessed to prescribing drugs that they knew would
not work (or that there was no reason for them to work) in order to
mobilize the placebo effect. (Placebo means "I will please.") 

 The classic example, of course, is antibiotics in the absence of
bacterial infection, but there are others. And unlike shark cartilage,
antibiotics can be harmful, not only with side effects but also with
the proliferation of drug-resistant bacteria. 
  
inkwell.vue.394 : Carole Berlin, "What You Should Know Before Your Next Mammogram"
permalink #117 of 141: Gary Greenberg (gberg) Tue 26 Oct 10 12:52
    
I did have it in front of me

Tilburt, J.C. et al. "Prescribing 'Placebo Treatments': Results of
National Survey of US Internists and Rheumatologists." British Medical
Journal, 337 (2008),
http://www.bmj.com/cgi/content/full/337/oct23_2/a1938
  
inkwell.vue.394 : Carole Berlin, "What You Should Know Before Your Next Mammogram"
permalink #118 of 141: Carole Berlin (caroleberlin) Tue 26 Oct 10 14:12
    
#113

David,

If you're referring only to breast cancer, I agree that the standard
of care is behind the times.  In fact, I think (though I don't know for
sure) that the same is true for all the other steroid-driven cancers, 
too.  (e.g., uterine/edometrial, ovarian, prostate, etc.)  

Nevertheless, that standard of care is what exists. It is in place 
It's what oncology offers, and it's not a uniformly bad thing, even
though it's big and clumsy and resistant to change. Many people
*believe* in that standard of care and put faith in their oncologists.
I don't consider it altogether useless.  It's not.  It serves its
various purposes, even though it doesn't always serve the patient as
well as I think it should. 
 
As to experts ... The experts we tend to turn to are not all
oncologists.  I don't know if that surprises you or not.  

Oncologists like Block and Linchitz are well regarded and
sought-after, as is Burzynski, but that's  less because they know MORE
than other oncodocs than it is because what they know and do is
DIFFERENT from other oncodocs.  They incorporate what the orthodox
medical community dismisses as 'alternatives.' 

They're out there, these oncologists who march to a different drummer.
 Finding them is work, just time on task. (and there's another
advantage of being an e-patient; you get to share the workload.) 
 
The rest of our experts are the researchers themselves, the ones who
come up with the ideas that eventually trickle down to become part of
the oncologist's arsenal.  They're the usually PhD's and sometimes
MD/PhD's whose entire careers have been focused on, say, hormones as
they relate to cancers, or insulin and breast cancer, or even just
insulin RECEPTORS (those protein molecules which, when functioning
properly, allow insulin to enter the cell <and more>) and the compounds
which enhance, retard, or even destroy those receptors altogether.) 
We look at those doing research into enzymes, into compounds that slow
or even stop cell proliferation and those working on compounds that
speed up apoptosis, cell death.  

There's more, but I hope that gives you an idea of what I'd consider
an expert for breast cancer.  
  
  
inkwell.vue.394 : Carole Berlin, "What You Should Know Before Your Next Mammogram"
permalink #119 of 141: Carole Berlin (caroleberlin) Tue 26 Oct 10 15:23
    
Argh!  No number.  About that iodine test.

Debunix, there are the real iodine loading tests done by Hakala labs
and Jorge Flechas' lab, and then there's the one that preceded them by
maybe fifty years: that little skin test.

The little test was suggested and explained to me by an MD I respected
greatly.  He's dead now , or I'd ask him to join us.
In his absence, though I can't speak for him, I can imagine what he
MIGHT say if he were here.

He'd say
"So what?  Why does it matter?  It's just a quick-and-dirty test
which, in the absence of anything more scientific at the time, we
relied on for years.  It gave us a rough idea of how much or little
iodine a patient might need; it gave us a starting point. It was fine
as far as it went." 

He might also have added , sotto voce, "And bumblebees can't fly."  
BUT I AM NOT HIM.  

Your comments make sense to me. Thanks for the explanation.
It's not a scientific test, no, but you can see that.  It's just a way
to get a rough idea, that's all.  The real levels can be tested by
Hakala's and Flechas's labs. 

I'm not willing yet to scrap the test for myself, because your comment
doesn't explain what I've seen myself. But maybe there are other
explanations too. I'll have to look. Thanks for the input. 

The test isn't what matters, thought.

What matters is the iodine itself, and the fact that it does go in 
through your skin. Not all of it, but enough to make a difference.

I hope people realize that it was the iodine test, not the idea of
iodine through skin that you objected to, because that iodine research
is some of the most important stuff to come down the pike in the last
fifty years.  

Forget the test.  Keep the iodine and the skin.

Read the iodine websites and the research first. THEN if you want to
throw it all out, that's your decision.  But don't let a judgmental
term convince you to throw out the baby with the bathwater.


 
  
inkwell.vue.394 : Carole Berlin, "What You Should Know Before Your Next Mammogram"
permalink #120 of 141: paralyzed by a question like that (debunix) Tue 26 Oct 10 20:12
    
I do not disagree that many things can be absorbed through the skin.

I am concerned that iodine might be getting extra play because thyroid
disease is a hot topic right now, with consideration being given to
raising standards for 'normal' thyroid hormone levels, and people
seeking thyroid hormone as if it were the answer to all things fatigue
in our busy lives.  So anything connected to the thyroid (and iodine is
certainly associated with it) may be hot stuff right now.  

But I frankly do not have the time to review the original research
related to iodine and the breast right now.
  
inkwell.vue.394 : Carole Berlin, "What You Should Know Before Your Next Mammogram"
permalink #121 of 141: Carole Berlin (caroleberlin) Tue 26 Oct 10 23:38
    
#109
Gail,
you wrote
"Sorry for making a statement instead of a question”

Statements are good too.  I'm glad you've been part of it, Gail. You
brought a lot to the table.

“Is anybody doing anything to collect the statistics on the outcomes
of  the treatments and experiences of e-patients, and if not, do you
think that is a good idea that would fit into the e-patient ethos?

That’s a reasonable question, but the answer’s not easily explained.  

I can't speak for all e-patients.  Though I've certainly been an
e-patient for the past thirteen years, the paint on my e-patient label
is still wet.  I wonder if e-patient Dave might not be the best person
to ask on this.

Still, here's my answer, too. 
Part I is Yes, of course we keep records, look at tx and outcomes, but
minimally.  At this time, our sole  "YES" is the Iodine Project – the
loading test followed by Iodoral and its companion nutrients (there’s
more to it).    So far, it’s reduced cysts and in some cases erased
them.  Maybe by next year it’ll be shrinking tumors.I hope it does.

Mostly,though, the answer is No: 

 “Outcomes of treatments” presupposes  actual treatments (as in “You
go to the doctor’s office and you get an IV infusion.)   

OUR “treatments” don’t look like standard treatments, though, so
they’re harder to define and therefore quantify.   

Example: If I revamp my entire diet to be in keeping with the Blood
Type Diet, or the macrobiotic diet, what would that be called?  A diet?
A treatment?   And what would you measure?  How I'm doing after a year
on the diet?  And what would constitute an effective treatment in this
case?  If my mets disappeared?  Shrank?  Just stopped growing?

For those of us with mets, the desired outcome might be another three
years of life.  But to get that three years, we might be doing many
things. What do you measure?

In short, we'd be a hard group for a researcher to study, if he were
looking at our personal protocols and our outcomes.  
  
inkwell.vue.394 : Carole Berlin, "What You Should Know Before Your Next Mammogram"
permalink #122 of 141: Gary Greenberg (gberg) Wed 27 Oct 10 07:30
    
>Example: If I revamp my entire diet to be in keeping with the Blood
>Type Diet, or the macrobiotic diet, what would that be called?  A
>diet?
>A treatment?   And what would you measure?  How I'm doing after a
>year
>on the diet?  And what would constitute an effective treatment in
>this
>case?  If my mets disappeared?  Shrank?  Just stopped growing?



That's a really good example of what all of us--docs, patients,
civilians, researchers--face in trying to sort through these issues.
The range of possible treatments (and causes of disase) and the methods
we use to validate them don't line up perfectly. When it comes to
therapies, the double-blind, placebo controlled trial that uses
statistics to yield an effect size in a given population--the gold
standard, as it is known in the industry--simply can't be used for many
treatments, allopathic and otherwise. What do you measure? is exactly
the question, and the method itself determines that only certain
phenomena can be measured at all. That doesn't stop researchers from
trying to shoehorn certain forms of suffering and certain
treatments--nearly all of psychiatry would fit that description--into
the method, but that's clearly a category error, and one that has
yielded distinctly mixed results. 

Of course, the marriage of medicine to scientific method has also
yielded tremendous advances in treatment, but it only does so by
limiting the horizons of knowledge. That's true of all methods, but
it's really easy for everyone to forget, with different consequences
for us depending on whether we're in the doctor's or the patient's
chair. 
  
inkwell.vue.394 : Carole Berlin, "What You Should Know Before Your Next Mammogram"
permalink #123 of 141: It's all about the margins (gail) Wed 27 Oct 10 11:38
    
This conversation has been a very thought-provoking experience.
  
inkwell.vue.394 : Carole Berlin, "What You Should Know Before Your Next Mammogram"
permalink #124 of 141: Maria Rosales (rosmar) Wed 27 Oct 10 13:25
    
The traditional way of assessing the outcomes of treatment definitely
"limits the horizons of knowledge" in some ways, but does having a
hodge-podge of treatments at once, with no way to even estimate what
effects any of them may be having, expand the horizons of knowledge?  

Especially when it is pretty easy to show that some of these
treatments are based on flawed science (which they use to justify the
treatment--it isn't like the advocates of these various non-mainstream
treatments are throwing science out the window, they are just using it
in odd ways), is there a better way to organize health care than around
double-blind studies?  

For example, the book that made the Blood Type Diet famous (which was
a best-seller; many alternative medicine leaders do not throw profit
out the window, either) uses a lot of fake science--talking about
lectins and other real scientific terms, but without any scientific
studies to support the claims that he makes (quite boldly) for the
harms lectins supposedly do to those of certain blood types.

If someone, as an individual, came to the conclusion that she felt
better when she ate fewer beans, I respect that and believe that.  When
someone says that an entire group of people will feel better if they
eat fewer beans, I want some actual, supportable evidence, even with
all the caveats that need to come along with any study.  And if the
person is going to make a lot of money off of claims that any
particular treatment is going to help, then I REALLY, REALLY want that
person to provide some evidence.
  
inkwell.vue.394 : Carole Berlin, "What You Should Know Before Your Next Mammogram"
permalink #125 of 141: Carole Berlin (caroleberlin) Wed 27 Oct 10 16:49
    
122
Your posts add a lot to the discussion, Gary; I'm glad you came in . 

About this:

"Placebo controlled trial" ----

A STORY:

When my oncodoc recommended chemotherapy, radiation, and tamoxifen, I
asked what I might expect if I did none of that.  Briefly, between his
prediction and that of the second opinion oncodoc, the picture I got
was that without tx, I was looking at recurrence within two years, mets
in three , and death in five.  

I wondered how they knew that. I figured there must be a stack of
studies somewhere proving that women who do chemo live longer than
those who don't.   I thought I owed it to myself to read those studies
before making a final decision. 
 
I wanted to know: 

1.  In studies of women with bc who did chemo vs women who didn't,
which side lived longer?   

2. What are the outcomes for women with breast cancer 
   who don't do standard treatment,
   and how do they compare with the ones 
   who do choose chemo and rads?  

I looked for those answers in the libraries at two medical schools and
at MD Anderson in Houston.  I enlisted the aid of librarians at all
three places.  And though there were studies that MENTIONED women who
had not done chemo, I don't remember seeing any comparing outcomes for
women who accepted standard treatment vs. their counterparts, the women
who refused. 

Granted, that was almost fourteen years ago, and things have changed. 
Maybe those studies are more widely available today. If you find one,
please share it.  

Fastforward a year or two.  We were discussing and reading studies on
Tamoxifen which was, at the time, the SERM of choice. Given the fact
that several of us (including me) were by then using bioidentical
progesterone to BALANCE estrogen instead of blocking it, we were
looking for 3-way comparative studies: {Tamoxifen or any SERM or AI}  
vs.  {bioidentical progesterone} vs. placebo.   

Tamoxifen vs.placebo was out there, but not Tamoxifen vs. bioidentical
progesterone, or Tamoxifen vs. biodentical progesterone  vs. placebo.

This is another tangled subject with more than two opposing sides. 

Fast forward.

Few of us have been medically or scientifically trained. It took a few
studies for us to realize fully what someone trained in science or
medicine might have been conscious of much sooner:

A lot of those studies are missing the third , placebo arm that is one
of the hallmarks of the 'gold standard' Gary spoke of.  What you
usually see are studies comparing outcomes  of treatment A vs.
treatment B -- this chemo vs. that, this SERM vs that one, this SERM vs
some AI.  

Once we noticed how often a placebo arm was missing, especially when
it came to chemo, it occured to us that we, as a group, were actually a
ready-made placebo arm.  Where else could you find a group of women
who had breast cancer but who hadn't done standard tx?

And so we wrote a letter to the NIH, suggesting ourselves as a group
to be all or part of the placebo arm of one or more studies. We thought
breast cancer research would be much improved if every chemo vs chemo
study had a no-chemo arm.  

We also thought the NIH would leap at the chance.    
They did not.  
Instead, as Gary and others probably guessed, they were horrified.  

It would be murder, they said, to deny a woman treatment. Highly
unethical.  Not possible.

US:   But we refused chemo (or Tamoxifen or whatever) of our own
volition.  You're not denying us anything. We don't even want it.  . 

NIH:  It would be so unethical.  ((((shudder))) No. Never.

US:   (one more time)  We're adults.  We refused chemo. It's our
choice.

NIH: (silence) 
HERE ENDETH THIS TALE. 

Gail, this part's for you:  

You've seen why the treatments we choose for ourselves make us
less-than-optimal subjects for study as individuals.  But neither are
we good subjects for inclusion in a study as all or part of the placebo
arm.  The fact that nothing is being denied us is irrelevant in the
eyes of the NIH.  Those good ethical regulations that protect women in
clinical trials also get in the way of perhaps-improved scientific
studies.  
  

More...



Members: Enter the conference to participate

Subscribe to an RSS 2.0 feed of new responses in this topic RSS feed of new responses

 
   Join Us
 
Home | Learn About | Conferences | Member Pages | Mail | Store | Services & Help | Password | Join Us

Twitter G+ Facebook