There's an app for medical professionals called Figure1 that has a strong user base of doctors that discuss rare cases/hard to diagnose medical situations and conditions. You're probably not allowed to post there (needs a degree/license; haven't checked recently if it's still so) but you might figure out a workaround to get your wife's case/data in front of a large pool of specific doctors.
Ask HN: I'm afraid my wife is dying. Is there a “quora.com” for rare cancers?
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Re: Ask HN: I'm afraid my wife is dying. Is there a “quora.com” for rare cancers?
#12I am in medical school. Just checked my notes for hepatic cyst. One thought could be an Echinococcus parasite infection - https://www.cdc.gov/parasites/echinococcosis/
Imaging - https://imgur.com/a/b0gJ3MZ
Wikipedia - https://en.wikipedia.org/wiki/Echinococcosis#Regions
Most likely this is not it. However, I would feel bad if I didn't at least mention it. Sincerely hoping for the best for you and your family!
Re: Ask HN: I'm afraid my wife is dying. Is there a “quora.com” for rare cancers?
#13Not quite what you’re looking for, but a number of top US institutions offer a virtual second opinion program:
https://stanfordhealthcare.org/second-opinion/overview.html
https://www.massgeneral.org/second-opinions
https://www.dana-farber.org/appointments-and-second-opinions...
https://www.nyp.org/digital-health/second-opinion
https://www.mountsinai.org/care/international/second-opinion...
https://www.mskcc.org/experience/become-patient/internationa...
https://www.ucsfhealth.org/second-opinion
https://my.clevelandclinic.org/online-services/virtual-secon...
Re: Ask HN: I'm afraid my wife is dying. Is there a “quora.com” for rare cancers?
#14One question, and one point for consideration.
Qn: You wrote that "All the material around it was removed", but then you wrote "at the time we went to the clinics the spots were too small to take samples". This seems to suggest that you know having samples of it would be ideal (or you'd not have written the second statement) - but don't you have biopsy samples from the material was removed the first time? What did they show?
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For consideration, I'd strongly reconsider this position: "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..."
Why? Well, three points:
a) I suspect that the biopsies could be taken via a relatively minor surgery - maybe laparoscopically. If this is the case, it would be a short procedure with a short recovery... which could result in absolutely critical information being collected.
b) obtaining biopsy samples of 'it' (whether it's a malignant tumor or not) is a hugely important step towards identification. If you can identify it, you're much closer to knowing how to treat it, or accessing relevant clinical trials, or putting your minds at rest. This could be life changing, or life-extending in a significant way.
c) if it is a malignant tumor, there are now techniques that can be applied to the biopsy tissue which give insight into the nature of the mutations that drive it, and therefore could point you towards a treatment. Two examples are mentioned here: https://www.cancer.gov/news-events/cancer-currents-blog/2017...
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(I have domain-relevant professional knowledge, but I'm not a liver cancer specialist - there's your caveat.)
Re: Ask HN: I'm afraid my wife is dying. Is there a “quora.com” for rare cancers?
#15Would u consider moving to US for work, get insurance and have your wife treated here?
Re: Ask HN: I'm afraid my wife is dying. Is there a “quora.com” for rare cancers?
#16Smartpatients.com to me is the equivalent. It helps if you know the name of the disease so that you get into the right community forum.
It is NOT a site full of oncologists, but you might want to try the Mayo Clinic second opinion service for that.
Re: Ask HN: I'm afraid my wife is dying. Is there a “quora.com” for rare cancers?
#17One question, and one point for consideration. Qn: You wrote that "All the material around it was removed" , but then you wrote "at the time we went to the clinics the spots were too small to take samples" . This seems to suggest that you know having samples of it would be ideal (or you'd not have written the second statement) - but don't you have biopsy samples from the material was removed the first time? What did…
agreed. also not a doctor, but I can't imagine bloodwork and ultrasounds would be definitive of anything. and I also can't imagine they wouldn't have biopsied the excised tissue - that seems grossly negligent. and too small? how big does a sample need to be to run histology, sequencing or look at it through a microscope?
you need to get the biopsy now. it sounds like it hasn't metastasized, so there's a chance they could excise the whole thing, or she could get a transplant. if it has metastasized it might be game over.
get biopsies and labs first, then look for a second opinion. not the other way around.
Re: Ask HN: I'm afraid my wife is dying. Is there a “quora.com” for rare cancers?
#18CAR-T
Re: Ask HN: I'm afraid my wife is dying. Is there a “quora.com” for rare cancers?
#19The question you have to always ask -
How many people have they seen with simular test results every year?
Push for a number.
If they cant give you a number then change the doc/institute till you get a number who can back it up with case files. If they have no clue about the numbers, then you can safely assume they dont know what outcomes are possible.
On a 35 year old house you can detect all kinds of issues every year, as testing equipment gets sophisticated and fine grained. That has nothing to do with whether the house needs repair everytime something is detected.
If they do have data, ask for outcomes. Again ask for specific numbers. No wishy washy bullshit. Keep pushing for specifics untill you have been referred to docs who have worked on similar cases.
Re: Ask HN: I'm afraid my wife is dying. Is there a “quora.com” for rare cancers?
#20IANAMD. Internet is full of crackpot sites with allcaps white text over a black background, and also slick university pages that overhype experimental treatment. Approach both with caution. In spite they may be wrong, sometimes they have some hints of interesting questions to make to your medical doctor. I recommend to begin with Wikipedia, but I guess it's a rabbit hole you already entered. There are other good site…
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 es…
It's strange that she doesn't have a biopsy of the first surgery. Do you think it has mutated?
The father of a friend died from liver cancer a few years ago. I think it was caused by an hepatitis instead of alcoholism. Anyway, he had some chemo delivered directly to the liver, but I'm not sure if that was a good/bad/stupid/fantastic/desperate idea.
Perhaps it can be useful to make a Nuclear Magnetic Resonance Spectroscopy https://en.wikipedia.org/wiki/Nuclear_magnetic_resonance_spe... . The normal NMR is useful to see the shape, but this version is somewhat similar to a chemical analysis of the tissue and in some cases it can distinguish cancer from other similar problems. As I said before IANAMD.