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Ask HN: I'm afraid my wife is dying. Is there a “quora.com” for rare cancers?

56 points·by helpseeker·vor 5 Jahren·25 comments

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helpseeker
·vor 4 Jahren·discuss
Information from either side is to be taken with a grain of salt, although Ukraine is winning the social media ops-game hands down.

I think since after the 1st week of troop movements it's pretty clear:

- Russia aims at encircling cities, draining the resistance there, forcing them into negotiations and so that enemy combatants can evacuate into western Ukraine (like they did in Syria)

- Ukraine aims at short-term luring them into cities (e.g. preventing humanitarian corridors, creating negative pr) and long-term building up an insurgency (turning Ukraine into Russia's 2nd Afghanistan).

A recipe for humanitarian disaster.

The upside: Russia doesn't seem intent to even set foot in western Ukraine.
helpseeker
·vor 5 Jahren·discuss
Thanks for your reply.

> I recommend to begin with Wikipedia, but I guess it's a rabbit hole you already entered.

Yes. And my wife falls into the category of 1-.1% of cases, where it's uncertain if it's a cyst, a HC or a HCa, if its malignant or not (+ fully functioning liver, and alcohol consumption of 1 glass of champagne every 5 years).

The standard liver cancer patient has a long history of alcoholism and well established liver-cirrhosis.

This results in fear of losing her within 12 months and dim hope of it all being "manageable" long enough for her to see her grandkids.

> * after a surgery + rays + chemo there are 5 or 10 years*

Apparently chemo works everywhere, but not in the liver.

> Internet is full of crackpots

I know, there's a lot of quackery. And understandably people will willingly choose the esoteric, if it gives them solace by thinking to be in control.

I'm not looking for quackery though. Rather like a single, or a group of Seheult MDs (https://twitter.com/MedCramVideos) just for liver-cancer and liver cysts.

Following the advice of people like a Seheult is not precisely "Following the Science" but rather "Following the frontrunners of science". But I think this is exactly what a lot of people with a rare disease a looking for.
helpseeker
·vor 5 Jahren·discuss
Thank you very much!

Unfortunately it gives me a 404, but I think I can navigate by myself.
helpseeker
·vor 5 Jahren·discuss
Thank you, will look into that!

Edit: I'm not sure if the page follows this principle (I will find out), but I was hoping for something like that:

For me "Follow the Science" means, that there are always people with very specific knowledge in a medical field, so narrow, that its highly likely that there are maybe 10 comparable people world-wide. Those people I'd call those that "Lead" the thing which we can "follow" just that, they have to come up with clinical trials to even prove their ideas/hunches. And apart from acquiring funding, to get a clinical trial started it may also be hard to find enough trial participants.

Since most of them I suspect would be scientists rather than practicing doctors, there is no incentive / possibility to help directly (if you need 10 more participants to boost the study above the credibility threshold, some of them have to be the placebo ones).

But I guess everyone would be willing to pay such a specialist, let alone a round table of the 10 others of the world, to hear their advice.
helpseeker
·vor 5 Jahren·discuss
Founded a startup with 2 co-founders, quickly found an investor, grew to 7 employees + 5-10 freelancers. Closed down 10 years ago.

Since then full-time software dev contractor, can't complain income wise. Apparently: Even running a page into the ground yields enough technological experience to make you interesting enough for other companies ;-)

Sometimes I felt the itch to try out a new venture with a friend. Some ideas including non-profit things. But quickly give up, because VCs are loaded with with requests, and those VCs that can shuffle free their calendar are not the ones you want to do business with.

YC never was an option because they demanded to move to California and (at least officially) little money.

Contracting delivers a very comfy cash-flow, but not really the fulfillment one might seek with a startup