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?
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.
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.
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.
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?
> 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).
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?
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...
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.
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.
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.
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.
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:
"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.
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.
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?
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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...
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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...
Whatever you do, please don't spread your ideas to anyone else. We're already dealing with the baby-killing anti-vaccination movement. We don't need more deaths.
Want an answer to your question? "How can such a complex system with unknown unknowns be tested?" Slowly, and a little bit at a time until we have a better understanding. Better to build upon past successes than to throw it all out and start over with your complete misunderstanding of biology.
I realize I may be responding to a troll, but there really are people out there who think like this and are in danger of causing innocent deaths with their 'opinions'.
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.
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?
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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.
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.
> 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.
> 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.
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!
What the hell are acidic or low oxygen environments, and "stagnant energy"?
Do you think that the environment is getting less oxygenated, or more acidic? Is our world getting more stagnant?
I got that you ignore clinical trials for some reason, but outside of that, can you test for these so-called other factors of cancer? What do they look like? From an epidemiological point of view, can you prevent them?
> What the hell are acidic or low oxygen environments, and "stagnant energy".
Organisms with Aerobic (high oxygen) vs organisms with anaerobic (low oxygen) metabolic processes within the human body.
Stagnant Energy is a holistic term to mean stuff that doesn't flow. Think of a knot in your back as "stagnant energy". In a healthy back, the muscles would distribute evenly.
> I got that you ignore clinical trials for some reason, but outside of that, can you test for these so-called other factors of cancer? What do they look like? From an epidemiological point of view, can you prevent them?
I don't know if you can even isolate causes with precision. I also question the utility of isolating causes.
If you can live a healthy lifestyle, with low stress, a natural diet, low pollution, then I would intuitively think that you will have less disease. The problem is in the western world, intuition is demonized due to our cultural bias.
> Organisms with Aerobic (high oxygen) vs organisms with anaerobic (low oxygen) metabolic processes within the human body.
That line just has no meaning when applied to physiology.
The partial pressure of O2 at the level of the cell is between 3-5mmHg O2.
This changes barely at all whether the body is hyper oxygenated (ie hooked up to high flow O2 in a hospital) or in the middle of a marathon.
The idea that there are 'low oxygen' centres in our tissues is rediculous pseudoscience. Ie, terms that are sprouted with no meaning.
And what do you mean by organisms? How basic is your understanding of human biology? Do you mean cells? It still has no meaning!
>I would intuitively think
Well that's the problem.
Life doesn't work by intuition no matter how lovely it may feel to be living with the holistic anti science mindset. Facts are facts and the facts are a 'holistic/naturalistic' lifestyle, whatever that may mean these days, is not going to prevent or cure cancer any more Than the 'normal' methods of stopping smoking, exercising and remaining in a reasonable weight range
By what process does acid/low oxygen cause cancer in your theory? By what sequence of events? Talk me through it.
Aside, the proposed 'cure' of anecdotal relaxing and energy therapies is heavily affected by survivor bias. And without consistent repeatability is unusable in a professional medical environment.
Did you seriously create a second account on HN so you could keep posting this nonsense without having your primary account take the brunt of the downvotes?
Without a process you're using correlation implies causation. Which can lead to a lot of wrong turns. Especially when that correlation is based on anecdotal non repeatable massively multi variate data like you said.
Could be true, could be a dead end, don't put as much weight as you did on it.
What am I peddling? I have nothing to sell you except my programming services.
I don't care if I'm "wrong" because this is a topic of exploration. People have to be willing to be "wrong" to challenge conventional wisdom leading to new understanding.
Except - your statements might be well meaning, but they are a) inflammatory b) poorly formulated and c) not backed by any kind of evidence. You keep referring to programming, but the equivalent of your argument is "oh well, Big data will win because my cousin frank used a spreadsheet to make a million bucks"
a: It's only inflammatory because there's a strong bias
b: It's only "poorly formulated" because the prevailing opinion isn't critical of western medicine
c: Discussions of conjecture are allowed. At this point, the causes cancer is conjecture, as the isolated causes have been elusive despite the billions poured into research
Never discuss downvoting in the comments. Do not complain about them. Do not anticipate them. Do not ask for them. Anyone who says anything often enough will suffer downvotes at some point. If you can't figure out why, then ignore it.
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?