6 ms·

As I lay dying: Final op-ed from LA Times journalist Laurie Beckland

87 points by webwanderings 12y ago

webwanderings 12y ago
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?
- grizmaldi 12y ago
  Such work has begun: http://www.flatiron.com http://www.flatiron.com
- briantakita 12y ago
  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...
  - robbiep 12y ago
    > Does cancer occur in healthy ecosystems? Honestly, what does that even mean? And if you are trying to suggest that cancer is related to some imbalance in the environment, the answer is, yes, cancer occurs everywhere and anywhere. It is not limited to humans and did not start post-industrial Revolution.
    - 001sky 12y ago
      Trying to extrapolate the origin math of a chaotic system is a fools errand.
  - Sanddancer 12y ago
    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 12y ago
      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?
      - sk5t 12y ago
        Well, there are historical records of cancer, but it's a bigger problem now because people are getting old enough often enough to succumb to it, and it is being diagnosed as cancer and not as "dropsy" or who-knows-what in lieu of superficially visible tumors.
      - stephen_g 12y ago
        I think conventional medicine tends to be worth a lot of money because the treatments have been empirically proven to be effective. I'm sure there are valid alternative medical treatments, but it tends to be that when they do turn out to be effective, the actual effective compounds or techniques are found and become conventional medicine, often also becoming far improved and made safer along the way. The problem, of course, is that while valid alternative medicines exist, many aren't valid and are often just practiced to make money out of unsuspecting people...
  - yetanother123 12y ago
    Also wanted to let you know: Brian - people around you, that you talk to a lot think you're a flake. Because you are. Please stop reading the fringe websites you do. Please start believing that scientific consensus means that - consensus. Smart people fight every day to move it forward (that's how they get tenure/paid).
- falcolas 12y ago
  Government regulation of how your personal information is created and stored makes such a database infeasibly difficult to create and maintain. The regulation is good, in that it protects an individual's privacy from those who could harm them with it (for example, the insurance industry, the paparazzi, your employers), but it also harms initiatives which aim only for good. Unfortunately, we have to account for the worst actors when creating and regulating something.
  - lbhnact 12y ago
    This partly true, though HIPAA is more of a burden because of people's misunderstanding of it than what it actually mandates. However, I posit that it is a lack of government regulation that has allowed health IT vendors to take no responsibility for supporting standards that enable data sharing across care settings. Every person in ill health deserves better study and care than we currently provide. These problems are indeed well understood by some of us in healthcare, the details of a US 'Interoperability Roadmap' are available at the below link. Please take a moment to see where we are now, where we are headed, and how you might contribute. http://www.healthit.gov/sites/default/files/nationwide-interoperability-roadmap-draft-version-1.0.pdf http://www.healthit.gov/sites/default/files/nationwide-inter...
CatDevURandom 12y ago
Crushingly important article on the reality of deadly breast cancer. The delta between public perception of the disease and the reality is stark.
dghughes 12y ago
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 12y ago
  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 12y ago
    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
justcommenting 12y ago
what a great testament to her life and to its worth
briantakita 12y ago
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 12y ago
  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 12y ago
    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.
voltagex_ 12y ago
Far too much psuedoscience in this thread.
sandworm 12y ago
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.
tankerdude 12y ago
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.

87 points by webwanderings 12y ago

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?

grizmaldi 12y ago
Such work has begun: http://www.flatiron.com http://www.flatiron.com
briantakita 12y ago
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...
- robbiep 12y ago
  > Does cancer occur in healthy ecosystems? Honestly, what does that even mean? And if you are trying to suggest that cancer is related to some imbalance in the environment, the answer is, yes, cancer occurs everywhere and anywhere. It is not limited to humans and did not start post-industrial Revolution.
  - 001sky 12y ago
    Trying to extrapolate the origin math of a chaotic system is a fools errand.
- Sanddancer 12y ago
  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 12y ago
    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?
    - sk5t 12y ago
      Well, there are historical records of cancer, but it's a bigger problem now because people are getting old enough often enough to succumb to it, and it is being diagnosed as cancer and not as "dropsy" or who-knows-what in lieu of superficially visible tumors.
    - stephen_g 12y ago
      I think conventional medicine tends to be worth a lot of money because the treatments have been empirically proven to be effective. I'm sure there are valid alternative medical treatments, but it tends to be that when they do turn out to be effective, the actual effective compounds or techniques are found and become conventional medicine, often also becoming far improved and made safer along the way. The problem, of course, is that while valid alternative medicines exist, many aren't valid and are often just practiced to make money out of unsuspecting people...
- yetanother123 12y ago
  Also wanted to let you know: Brian - people around you, that you talk to a lot think you're a flake. Because you are. Please stop reading the fringe websites you do. Please start believing that scientific consensus means that - consensus. Smart people fight every day to move it forward (that's how they get tenure/paid).
falcolas 12y ago
Government regulation of how your personal information is created and stored makes such a database infeasibly difficult to create and maintain. The regulation is good, in that it protects an individual's privacy from those who could harm them with it (for example, the insurance industry, the paparazzi, your employers), but it also harms initiatives which aim only for good. Unfortunately, we have to account for the worst actors when creating and regulating something.
- lbhnact 12y ago
  This partly true, though HIPAA is more of a burden because of people's misunderstanding of it than what it actually mandates. However, I posit that it is a lack of government regulation that has allowed health IT vendors to take no responsibility for supporting standards that enable data sharing across care settings. Every person in ill health deserves better study and care than we currently provide. These problems are indeed well understood by some of us in healthcare, the details of a US 'Interoperability Roadmap' are available at the below link. Please take a moment to see where we are now, where we are headed, and how you might contribute. http://www.healthit.gov/sites/default/files/nationwide-interoperability-roadmap-draft-version-1.0.pdf http://www.healthit.gov/sites/default/files/nationwide-inter...

CatDevURandom 12y ago

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

dghughes 12y ago

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 12y ago
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 12y ago
  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

justcommenting 12y ago

what a great testament to her life and to its worth

briantakita 12y ago

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 12y ago
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 12y ago
  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.

voltagex_ 12y ago

Far too much psuedoscience in this thread.

sandworm 12y ago

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.

tankerdude 12y ago

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.