Ask HN: I'm afraid my wife is dying. Is there a “quora.com” for rare cancers?
21–26 of 26 posts
Re: Ask HN: I'm afraid my wife is dying. Is there a “quora.com” for rare cancers?
#22As a cancer patient, it seems absolutely necessary to do a biopsy to know what your wife is dealing with.
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).
Re: Ask HN: I'm afraid my wife is dying. Is there a “quora.com” for rare cancers?
#23What are the results of biopsies specifically? How is it not spreading, there are new spots? Are your doctors nuts?
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.
Re: Ask HN: I'm afraid my wife is dying. Is there a “quora.com” for rare cancers?
#24CAR-T
Woudn't they need to know a lot more about this suspected cancer, for carT to work?
They seem to be in the dark even what type it is, and seem to be even somewhat misled by physicians (clearly spreading, or maybe he doesn't understand staging).
Re: Ask HN: I'm afraid my wife is dying. Is there a “quora.com” for rare cancers?
#25Has anybody looked at this being a Neuroendocrine tumour? These can present in this way, stable, grow slowly don't spread well. My mum has had this for 6 years.
Re: Ask HN: I'm afraid my wife is dying. Is there a “quora.com” for rare cancers?
#26Could it possibly be a neuroendocrine tumor (NET). These can sometimes spread very slowly on the liver.