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)
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...
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.)
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 sites like Mayo Clinic, but they have more good generic info that a deep discussion about corner cases. The problem is that each cancer is very different, so each one is a corner case.
I think it's important to understand the different tradeoff. There are some horror stories about selling the family home to pay a procedure that extend the expected lifetime a few month. And there are also good case where after a surgery + rays + chemo there are 5 or 10 years without any problem, and then another surgery/treatment extend the life time even longer. It's important to understand the difference, so I think it's useful to read as much as possible to be able to talk with the medical doctors.
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.
Before i had my diagnosis 3 doctors suspected 3 different more or less bad conditions from CT and MRT. After the biopsy the different diagnosis was 100% clear within a week.
The biopsies i had where not much of a thing, local anaesthesia and they stick a big needle into you while your in the CT. I could always go home the same day and didn't need any pain meds afterwards. Even if it turns out to be cancer and incurable often there are options that will prolonge her life and it also adds peace of mind to know what your up to (after the initial shock).
Best of luck to you, ping me if you want to chat or talk (i'm also from germany with kids).
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.
You may want to have several opinions, as biopsies are actually subjective to a significant degree, but nobody in the field will tell you this.
Do you have histology slides? What kind of cell in the histology slide? Have they narrowed down the type of cancer: neuroendocrine, liver, blood, lymphatic, etc? They are all very different diseases.
You want someone who specializes in that specific cancer. Do not wait. Time is of essence.
[https://institut-curie.org/page/international-patients-insti...
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!
It is NOT a site full of oncologists, but you might want to try the Mayo Clinic second opinion service for that.