I had an appointment with my GP today - mostly because I ordered a disk of my MRI.
The reason I ordered the disk? My internist highly recommended it as none of my doctors have any more information than the same reports as I do about the size of the tumours. 5cm is the big factor for risks, and I know one is 4.4cm (just that one dimension, I wasn't given a x * y * z the way some other people are). I was looking for information about the general numbers in each range. Ie. so many under 1 cm, how many over 3 or 4 cm. LIke is the 2nd biggest 4.3cm.
It sounds like some of the testing from the biopsy likely was not done. Those tests are too look for certain mutations - one tends to be genetic and family members screened, one tends to rupture more easily, one has a pretty high rate of turning into cancer over time, etc. So this would affect some of my decisions.
My GP acknowledges the reason for why I have been reading so much about things and that it's not like I'm randomly googling symptoms. She also wants me to stop doing it at least for a while. I can't remember what I've shared, but there's been a huge mess of things. For one, I wasn't even going to get a referral initially by my Internist but I refused to just blindly follow his treatment plan (which I am doing now as the hepatologist requested it too and I already knew was something that would have to be tried) which is affecting other conditions and certainly wasn't when I was still recovering from the biopsy. It was only due to my request I got that referral - and am still waiting to see the hepatologist, request came via the receptionist. My internist can't even diagnose me as he has never heard of hepatic adenomatosis. So with everything that has piled on I am emotionally a mess. I agree with my GP. Now I have this disk though - couldn't help but look at it. It's not even just images, it's a whole program. Which my Internist seems to think I should be able to use to answer my questions. I suspect there are at least 3 that are big after playing around with it a bit but there's so much there. Have I even identified the liver correctly? I think so. Took me a minute to realize the right side is on the left. I'm confused how my intestines and everything else fits in, it looks huge compared to anything else I identified - even the lungs but it is abdominal so I think I'm not seeing all of them. ANNDDD ... I'm supposed to stop looking into things. The day I have this disk (I did only look at it with Chemguy, not on my own). I was also told to follow up with my hematologist to check about the biopsy tests. And my ENT prescribed me a new medication yesterday and I'm seeing a new dermatologist on monday ...
I also really feel like with how long things went with nothing being said to me about abnormal tests that if I didn't do this I would have likely only gotten it diagnosed after one ruptured, which on it's own is life-threatening. Add in the HAE and things are more complicated. So looking into things on my own likely may have prevented me from dying although I don't know how long I would have done before the rupture happened.
I agree I need to back off on things for a break. Will look at tests as they come in, but no more trying to interpret it all together myself for a while.