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

Fellow hackers, I'm a long-time lurker, but this is a bit personal (thus the new account).

Short version: Is there a website or world-wide pool of oncologists which I could send an ultrasound-screening image or blood data, so that in return my little family can know how long we'll have our mommy?

Long version:

My wife, 35 years old, mother of two, has a very rare "thing" developing quite fast on her liver. She very rarely drinks alcohol, like once every 5 years, has no history of substance abuse, and according to blood screens her liver-values are fine with no indication of the liver being affected at all.

When our second child was born, 1,5 years ago, it was done via an emergency c-section, because of a sudden inner bleeding. Mother and child luckily survived. We found out the bleeding was caused by a "thing" bursting. The clinic's head oncologist, after having multiple round-table calls with other head oncologists from other clinics finally decided, that this was likely a malignant cancer.

So here we were, newborn baby, unharmed but an unnoticed 10cm-sized cystic cancer suddenly bursting, meaning it must have been there for quite some time. All the material around it was removed, the liver quickly grew back.

But on subsequent screenings new spots appeared. And now 1,5 years after the old thing was removed, some have grown to 5cm in size. No other organ seems affected and the liver still functioning, but one tumor marker is increasing.

We went to multiple clinics in Germany, even to Tübingen, which is rather regarded for their knowledge in the field. But no one can really tell us what this is or what to do [1]. It's not affecting any organs, isn't spreading (it had time to do so and just seems to live on/in the liver's surface), and since it's the liver chemotherapy doesn't seem to be an option.

We're seeking help, and clarity. And if there's one strength of the internet, it is connecting the right people with each other. Maybe posting this here helps.

[1] At the time we went to the clinics the spots were too small to take samples. I understand taking them now might prove more helpful - but then, if it's an incurable cancer my wife is kind of reluctant to have another surgery just to find out what we are already pretty sure what it is...

(Excuse any spelling errors, I'm not a native speaker)

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.

Thank you very much!

Unfortunately it gives me a 404, but I think I can navigate by myself.

Fixed: https://institut-curie.org/page/international-patients-insti...

There was a New York Times series about rare diseases. It might have been called "Diagnosis". Maybe reaching out to them would be an option. It seems odd that a cancer center can't tell you what type of cancer it is other than malignant cystic cancer, even when consulting with other specialists/ centers.

If you have more info about it, maybe try searching PubMed for articles/cases that match similar descriptions and lab values.

If you can't get any answers then look around for various regimens and suppliments that could help with general cancers, but verify them by finding studies supporting them. Check with the doctors to make sure it won't make things worse or interfere with other treatment.