
As I lay dying: Final op-ed from LA Times journalist Laurie Beckland - webwanderings
http://www.latimes.com/opinion/op-ed/la-oe-becklund-breast-cancer-komen-20150222-story.html
======
webwanderings
Excerpt:

We now know that breast cancer is not one disease. What works for one person
might not for another: There is no one “cure.” We are each, in effect, one-
person clinical trials. Yet the knowledge generated from those trials will die
with us because there is no comprehensive database of metastatic breast cancer
patients, their characteristics and what treatments did and didn't help them.

In the Big Data-era, this void is criminal. Consider what Wall Street does.
Even the tiniest companies can see how much stock they sell, compare
themselves to cohorts, review history, predict trends. Why can't we create
such a database for cancer patients, so we can all learn from patient
experiences and make more educated decisions on what treatments will extend
and improve lives?

~~~
briantakita
Does cancer occur in healthy ecosystems? Maybe big data & reductionism is an
incomplete approach...

On the flip side, such techniques will make some people a lot of money, so
ignore or downvote my concerns...

~~~
Sanddancer
Yes, cancer occurs in healthy ecosystems. The process of tumorgenesis has a
lot of variables that we're still unwinding.

There is another cancer out there that is deadlier, and makes a lot of people
a lot of money too through questionable means. It goes by names of holistic
medicine and "questioning big medicine". It's a gang of the uninformed, led by
charlatans and frauds preying on the sick and the dying, spewing their
effluent without regard. It metastizes in communities of those looking for
some sort of hope beyond hope, infecting these vulnerable communities. You,
good sir, are that cancer. You, good sir, with your ignorance lead people to
death with your ignorance. I hope, good sir, that you educate yourself, before
you cause any more pain, suffering, and death.

~~~
briantakita2
I'm a programmer who eats healthy & practices yoga. I don't make money from
cancer patients.

You are demonizing many techniques. Are you saying that there is only one way
to medicine, and that is large drug companies & established professional
organizations?

How do new practices & techniques get off the ground in such an environment?
Is it possible to be healthy & treat disease independent of these companies in
your opinion?

Also, where is the archeological evidence of cancer epidemics in ancient
times?

~~~
sgift
> I'm a programmer who eats healthy & practices yoga. I don't make money from
> cancer patients.

That is very noble of you and I read an implied hypothesis that the approach
used by "large drug companies" and "established professional organizations" is
worse than yours because their motives are less noble (e.g. companies want to
make money, organizations want to further an agenda etc.), but a hypothesis
alone is worthless if you cannot show evidence to prove it.

I give you that it would be hard to provide direct evidence for this
hypothesis (neither companies nor organizations will be very helpful in
providing information which could show that they lied for various reasons), so
a good approach seems to be the indirect route: Show that your ideas work as
well as the established ideas in a study following the established guidelines
for scientific quality (double blind, big enough, and so on). Then you have
shown that your hypothesis has merit and has a good chance of being sound
advice.

So far, all we have are your believes, which is not very much when we talk
about a topic that could very well change peoples lifes for worse (or better,
but it is always a good idea to be cautious with unproved theories).

~~~
briantakita
I'm not a practitioner so I'm not going to make any studies.

As far as the holistic crowd, many are artsy people, with a wide range of
interests, who have little interest in creating scientific studies. They have
to earn a living, which is often difficult. Yes, there is also quackery,
though I suspect there are some nuggets of gold in these practices.

Among the scientists, it feels like there is a strong sentiment against such
holistic practices & a perception that the practitioners are scammers. Judging
from the reaction to me in this discussion, it would take a brave scientist to
stick out his/her neck to spend years, money, & reputation to research such
practices; when Bayer is offering a large grant to study their drugs.

There's an old IT saying, "Nobody got fired for using Microsoft". Wouldn't the
same apply here?

------
dghughes
Quite sad yet more women will die of heart disease than breast cancer.

Although I do like her request:

>Promise me, I told my friends and family, that you'll never say that I died
after “fighting a courageous battle with breast cancer.” This tired, trite
line dishonors the dead and the dying by suggesting that we, the victims, are
responsible for our deaths or that the fight we were in was ever fair.

And the slamming of that marketing machine Susan G. Komen which has become a
monster that congratulates itself, sues people and trademarks the colour pink;
I'm sure that's important to their machine.

~~~
kevin_thibedeau
This is what disgusts me most with Komen's annual "save the boobies" campaign.
It really turned into a circus when they started smearing their marketing
gimmick over professional athletes and garbage cans. It speaks to the
shallowness of American culture that diseases can be "marketed" for the sake
of the almighty buck.

~~~
colinbartlett
Check out the documentary Pink Ribbons, Inc. which aims to expose that exact
phenomenon. Trailer:
[https://youtube.com/watch?v=3QPZfcYTUaA](https://youtube.com/watch?v=3QPZfcYTUaA)

------
sandworm
There is no "comprehensive" database in the US. With 50+ jurisdictions and a
nightmarish insurance system I am not surprised. But if you google "metastatic
breast cancer database UK" you find this:

"The Recurrent and Metastatic Breast Cancer Data Collection Project Pilot
report"
[http://www.ncin.org.uk/view?rid=1043](http://www.ncin.org.uk/view?rid=1043)

"Fifteen breast cancer units across England took part in the pilot for six
months from June to November 2011. They identified 598 patients with recurrent
and/or metastatic breast cancer, who were then matched with the National
Cancer Waiting Times Monitoring Dataset (NCWTMDS) and with data received by
cancer registries."

It looks like the UK has been doing exactly what the OP found wasn't happening
in the US: centralized databases.

------
CatDevURandom
Crushingly important article on the reality of _deadly_ breast cancer. The
delta between public perception of the disease and the reality is stark.

------
tankerdude
What exactly will "Big Data" really do for this situation?

Big Data for this seems like not quite the right tact, unless you are shooting
to categorize people and hope for the right drug for the many possible
mutations for the cancer. I don't think we'd get very far as the samples would
still be too small, and there would be too many possible mutations.

The only thing that will help, IMO, that is a future cure is cancer
immunotherapy that is specific to just that one person.

It has worked in many cases, but it's very expensive. One of these days, that
price could plummet, and even stage 4 could theoretically be kicked to the
side, with no need for chemo.

------
justcommenting
what a great testament to her life and to its worth

------
voltagex_
Far too much psuedoscience in this thread.

------
briantakita
I hate to say this (& will be downvoted), but our obsession with reductionist
thinking blinds us to the actual causes of cancer. Just like unit tests blind
the programmer from how the system works.

From a holistic perspective, cancer is caused by an acidic, low oxygen
environment or "stagnant energy". Emotional well being, energy work, & massage
therapy has also been anecdotally reported by practitioners to cause cancer to
remiss.

Now before you criticize me for "lack of studies", please understand that
studies do a poor job in complex environments. Just like it's been elusive to
study programmer effectiveness due to high variability of conditions, the
human body living in a specific environment, with specific habits is highly
complex & variable. It's foolish to assume that we can account for all of the
variables when we don't know what we are missing.

About the bias, I can only say that these are anecdotal accounts. Some things
seem to make sense, such as a health in environment, emotions, diet, physical
body, spirituality, etc. would contribute to the body acting in healthier
ways. A purely reductionist philosophy will not accept such factors unless
these attributes can be isolated. However, how can such a complex system with
unknown unknowns be tested?

\---

Edit: I know, I committed blasphemy by criticizing a purely reductionist
technique. Go ahead and downvote me due to your religious (or financially
sponsored) conviction ;-)

I'm happy to debate as well...

\---

Edit2: Given I'm already at -4, I doubt anybody will be willing to answer such
a basic question. Oh well, lol. I'm disappointed...

~~~
sk5t
Most likely you are getting downvoted for casting about a line of unscientific
quackery. General hacker objections to this have _nothing_ to do with
"religious (or financially sponsored)" bias, nor groupthink, unless you
consider the scientific method groupthink.

~~~
briantakita
Are you talking about the scientific method or the marketing of the
institution of corporate Science, which increasingly looks like a religion?

As far as "quackery", that sounds analogous to "blasphemy". Some techniques
work & some don't. Some techniques are not in the financial interests of
mainstream industries to be studied.

Another issue is, who can afford to create a "valid" peer-reviewed article? It
seems like you need a lot of money to do so now days. Who has the money?

\---

Edit: But again, such concerns are not critically thought about due to
groupthink (i.e. a reductionist, evidence-driven philosophy).

It's like manipulation & gamesmanship of the market is inconceivable...How
naive.

~~~
sk5t
Scientific method = develop a testable hypothesis, design an experimental
protocol, crunch the numbers, repeat, repeat, repeat, document it, work with
peers to replicate the experiment if the results look useful.

Quackery = employ contextually meaningless words like "low-oxygen" or "energy
work," profess there is an effective plan of treatment that vested interests
would like to hush up.

Guess what, people dying of cancer will try almost anything to get better. If
massage or interpretive dance worked better than chemo, it wouldn't remain a
secret.

~~~
briantakita
> Scientific method = develop a testable hypothesis, design an experimental
> protocol, crunch the numbers, repeat, repeat, repeat, document it, work with
> peers to replicate the experiment if the results look useful.

We are in agreement about the scientific method.

The thing is institution of Science is an organizing body that publishes
research. Most of the scientists are paid by corporate interests. As with
Tobacco scientists in the 1950s, there have been some shady practices with the
FDA & related corporate scientists.

[http://www.slate.com/articles/health_and_science/science/201...](http://www.slate.com/articles/health_and_science/science/2015/02/fda_inspections_fraud_fabrication_and_scientific_misconduct_are_hidden_from.single.html)

> Quackery = employ contextually meaningless words like "low-oxygen" or
> "energy work," profess there is an effective plan of treatment that vested
> interests would like to hush up.

It's more like hand-waving on my part. I'm pointing out that there are other
theories out there that have not been fully explored.

> Guess what, people dying of cancer will try almost anything to get better.
> If massage or interpretive dance worked better than chemo, it wouldn't
> remain a secret.

Part of the problem is it's difficult to have a controlled experiment with all
of these alternative medicine techniques, due to variability of practices.
Also, less established practices do not have the capital & institutional
mindshare to facilitate proper scientific studies.

Another possibility is cancer is a complex phenomena that does not have simple
causes.

~~~
sk5t
Cost of testing should work to the benefit of alternative approaches,
shouldn't it? It's not very expensive to give a massage or lead meditation.

The problem is, whether due to variability of practices or some other factors,
in the best case, practitioners cannot reliably say if their treatment offers
any benefit. Without statistics there is simply no way to identify a useful
treatment; people are _horrible_ at correctly identifying correlations on
their own when the data are in any way nuanced.

So, it seems morally and intellectually hazardous to suggest alternative
medicine when there is no credible way to show that helps anyone other than
the purveyors of crystals, water-molecule-aligning bottles, wellness seminars,
etc.

But ah, we do know that placebos have some benefit. So have a placebo instead!

