Ask YC: How to Start a Cancer Wiki | Hacker News Reader

Ask YC: How to Start a Cancer Wiki

14 pointsadammichaelc29 comments

Forgive me for being a bit more personal than HN normally gets.

The people who read Hacker News are among the brightest, most productive, and most creative people I've associated with. That's why I'd like your advice, and your help.

My dad was diagnosed with nasopharyngeal cancer about 2 months ago. My family and I have watched him go through weeks of radiation treatment. After burning his neck & the tissue inside his throat, it hurts him to eat.

With all the side-effects from drugs and treatment, and after only 1 round of chemotherapy, he has decided to stop the chemo. This has devastated my family, and I sit and wonder what to do.

I decided to start researching alternative cancer treatments, and set up http://KancerWiki.com (using the open source PM Wiki) to organize my research.

I have a few questions.

1. Do you have any suggestions for how to get the help of others who might want to help? Perhaps people whose parents or loved ones are similarly suffering? There are probably other people out there who have already gone through something similar & it'd be great to hear from them about non-traditional or modified-from-traditional methods of treating cancer (there seem to be a lot of hoaxes and scams out there for cancer treatment, so I'd like to find scientifically-verified treatments).

2. Does anybody know the story of how Wikipedia or other popular Wiki's have spread?

3. Does anybody here want to help in any way?

Things I need help with:

1. Posting information about non-traditional (but science-based) cancer treatments.

2. Organizing and building the site.

3. Spreading the word about the site.

Thanks! I look forward to hearing back from you. http://www.adamchavez.net/blog/contact/

While it's a somewhat different focus (more technical as opposed to patient-based), the most successful medical wiki I can think of is http://www.fluwikie.com/.

As for the latter two of your posts, I would check out the existant support forums for the particular type of cancer you're going to focus on (I say this assuming that some forums or Yahoo! mailing lists exist out there, as they seem to for just about all diseases).

You can start by not needlessly spelling cancer with a k.

My best however, to you and your family.

Cancrwiki.com is available. :)

Have you ever bought a domain? I see this meme continually and even on threads on hacker news. Do laymen really think that people are choosing these silly spellings because it is "the cool thing to do?"

FYI, to a ridiculous extent, all reasonable, 10 characters or less, English or English-ish domain names are occupied by squatters. I am not the OP, but so you understand the depth of the issue, I invite those who upvoted the parent to try finding available cancer-related domain names that would be appropriate. Submit 10 at the link below. If by some chance you do find a good one, why not report back and help out the op?

http://www.123cheapdomains.com/domain-registration/bulk-regi...

cancer-wiki.com

canceria.com

I've informally (but seriously) studied natural health for several years, and the natural health community is really quite opposed to most of mainstream medicines approaches to cancer treatment.

Depending on where you're located, you may be able to find naturopathic doctors in your community.

One of the best author's I've encountered in this space is Dr. Samuel Epstein -- http://www.preventcancer.com/about/epstein.htm who has a huge list of credentials/publications, and goes to great lengths to show why the structure of the cancer industry, including things like the American Cancer Society, at least in the US, isn't well motivated or well suited to promoting the most effective approaches.

The natural health community's approach to wellness is fairly intrusive on the normal American lifestyle. Unless you live in a city with a really good selection of restaurants, it often means cooking all your own food and drastically changing your diet. I personally avoid all of: sugar/substitutes, hydrogenated oils, MSG/yeast extract, homogonized milk, refined grains, artificial colors/sweeteners, anything where oils are heated above their smoke point. I mainly eat raw fresh produce, whole grains, and organic meat. I've come to enjoy cooking -- it's a useful skill, both pragmatically and socially. :)

Some things frequently mentioned as having anti cancer properties are maca root, and tumeric, especially when combined with black pepper. (all raw.) Some of the very high end multivitamin supplements that you find in health stores include these. Frequent sunlight without sunscreen is important too.

In general, the natural health community's perspectives on many things are often counter to mainstream medicine's positions. Be prepared to evaluate some core beliefs in undertaking this research. :)

Frankly, I find the idea of "natural health", when pitched to cancer patients, offensive. Sure, I am willing to believe that eating more organic, raw, and otherwise non-processed food seriously reduces the risk of cancer. But prevention is not a treatment. You can't raw food your way to a cure to cancer. It just doesn't work. People die because they become so deluded. Indiscriminate as it may be, chemotherapy works.

You suggest that naturopathic medicine is opposed to mainstream cancer treatment, but you don't suggest alternatives. What is an effective alternative to chemotherapy?

Can you cite the studies that show that changing lifestyle (organics + supplementation) doesn't influence cancer outcome?

Frankly, I find your know-it-all arrogance shocking, and all that is wrong with the medicine. 90% of doctors I have worked with have the same mentality. If it's not studied, how can you come to a conclusion?

Here's one little extract to whet your appetite.

[edit: btw I am in no way advocating naturopathy, homeopathy or other well debunked shams]

-----------------------

Men with early stage prostate cancer who make intensive changes in diet and lifestyle may stop or perhaps even reverse the progression of their illness, according to a new study.

The research is the first randomised, controlled trial showing that lifestyle changes may affect the progression of any type of cancer.

The research team behind the American study looked at 93 men with biopsy-proven prostate cancer who had elected not to undergo conventional treatment for reasons unrelated to this study. The participants were randomly divided into either a group who were asked to make comprehensive changes in diet and lifestyle or a comparison group who were not asked to do so.

Participants in the lifestyle-change group were placed on a vegan diet consisting primarily of fruits, vegetables, whole grains, and legumes supplemented with soy, vitamins and minerals. They participated in moderate aerobic exercise, yoga/meditation, and a weekly support group session. A registered dietitian was available for consultation, and a nurse case manager contacted the participants regularly.

The burden of proof is not on me here. I am certainly in favor of more medical studies about alternative approaches to cancer treatment. More science is a wonderful thing.

Absolutely. The trouble is mainly research funding, and then publishing and marketing the research that's already happened (there's more scientific research on alternative treatments than is commonly known.)

Pharmaceutical companies aren't likely to invest millions studying turmeric, spirulina, chlorella, sunlight, etc. There are credible studies if you intentionally go looking for them, though.

You made a claim that changing your lifestyle cannot possibly cure cancer. Surely the burden of proof is on the claimant? How do you reconcile the growing body of evidence to the contrar?

My intended claim, which I admit could benefit from more precise wording, is that lifestyle changes are not more effective than conventional treatment.

Shouldn't you have to back up a bold claim like that with proof though? Conventional treatment is often marginally better than placebo.

No, I don't have to back up it up. That's the whole point.

Explain?

Decades of the scientific method have established the status quo. You, as the outsider of convention, have the burden of proof. You intuitively know this -- if there was such compelling proof, you would be able to convince a lot of people of the potential, rather than saying "no, I don't have to prove it, you need to prove science." Science is already proven. I'm not denying the potential of alternative treatments, but for now, I expect you and I both would take the chemotherapy over making ourselves guinea pigs.

Saying that something is better than something else would surely merit a single clinical trial, showing large effect low p outcomes in favor of chemo vs lifestlye? Can you point to a single study since it is already proven? :)

Here are a few that may change your mind: http://jn.nutrition.org/cgi/content/full/137/1/233S http://www.annieappleseedproject.org/lifchancline.html http://bastyrcenter.org/content/view/913/

Surely you must admit that your claim that lifestyle change cannot reduce mortality rate is premature. It's only recently being studied, and with the great early results we will see many more such papers investigating the effects.

My money would be on a combination: Lifestyle change + aggressive supplementation + chemo.

I've said that all along -- supplementation + diet change + chemo is better, and certainly no worse, than chemo alone.

Agreed, but read your post again: ...But prevention is not a treatment. You can't raw food your way to a cure to cancer. It just doesn't work. People die because they become so deluded....

"It just doesn't work" is a statement of fact. I showed you some research that refutes this (lifestyle change alone can cure in certain cases). What more do you need to change your opinion?

Relax -- it's not like I'm suggesting faith healing. :) Alternatives and choice are needed. Chemotherapy "works" by causing enough DNA damage that the body is better able to identify cancerous cells and destroy them. Hardly an elegant solution. It's important to note that even with chemotherapy, it's still the body itself actually dismantling the tumors.

In any case, it sounds like the dad already made his decision, and I can understand that. Chemotherapy takes a tremendous toll of suffering, to the point that if the only alternatives were chemo and death, it's still not always an easy choice.

In general, the natural health approach is to support the body's healthiness in every way possible, such that it can do its job. Our bodies dismantle plenty of cancers each day on their own. That may seem simple, but it deserves more investigation than a cavalier dismissal for the sake of the child^h^h^h^h^h cancer patients.

So, to be clear, the alternative I'm suggesting is: Be willing to greatly change your died and lifestyle, and find a naturopathic doctor/clinic and work with them. http://www.naturopathic.org/

Get away from here, hippie. Cancer patients need real medicine, not platitudes from morons.

Depending upon what stage the cancer is in and the prognosis for additional treatments, your father may have made a rational decision. In the end it's his decision.

Instead of creating a new forum I would encourage you to consult and contribute to existing forums devoted to nasopharyngeal cancer--and other available information sources--with a focus on helping your father. This has to be your immediate priority.

You might also consult http://www.clinicaltrials.gov it lists 115 new studies that are recruiting patients.

Have you seen this talk: http://www.ted.com/index.php/talks/eva_vertes_looks_to_the_f...

You may wish to add it to the wiki as a "non-traditional but scientifically verified" way of thinking of cancer. Very interesting. I wonder how far she got with the research since 2005.

This is a great idea that could really help people that don't have the resources to go and get opinions from many different doctors by learning from the experience of those who do. I wish you the best.

Have you thought about using twitter? I know it may sound hackneyed, but with a legitimate cause and a project they can rally around, social media types can really help get the ball rolling.

There is a belief that drinking http://en.wikipedia.org/wiki/Pomegranate juice every day will prevent cancer.

My heart goes out to you and your family.

It's often extremely difficult for people to go through radiation and chemotherapy. He sounds like he's in the middle of that. I would encourage you to keep talking with him and his doctors. Tell the doctors about what he's experiencing. Often there are good ways to ameliorate side effects. Insist that your father's discomfort be allayed as much as possible. Consult with dieticians and nutritionists about good ways for your father to get proper nutrition while experiencing the radiation and chemotherapies. If his physicians don't provide alternatives, consider consulting with other doctors.

Often there are emotional issues at play in the face of serious illnesses that aren't addressed by doctors, or even families. Again, encourage your father and all the family to ask questions of the doctors, and get those questions answered. Listen to your father with empathy. Acknowledge and reflect his pain...and most importantly, the uncertainty you are all facing. You might consider counseling for he and/or the family. There is actually a difference between the emotional pain people struggling with serious illness undergo, and actual clinical depression (major depressive disorder). It's not out of the realm of possibility that antidepressant medication might help.

I would encourage you and your family to continue down the path of evidence based medicine. You are right. There are a lot of quack "cures" in the realm of "alternative medicine" out there, designed solely to take your money.

Thanks for your thoughts logjam

I am not a doctor, but I did a quick google search on this, and came up with this article, http://www.sciencedaily.com/releases/2008/06/080628155300.ht... relating to white blood cell therapy, whereby the immune system is stimulated to try and counteract the cancer. Such avenues could be worth looking into, though again, I am not an expert.

Reply on news.ycombinator.com