It does sound scary Sim. Can't deny that at all and it is only logical that that gives you even more anxiety.
But we must also not forget that technology and skills have advanced so much the past decades. CT and other scans nowadays give us much more information too. On one side that is scary, because there is so much more terms, measurements and other notes and reports and information available for both doctors and patients, but it also gives the opportunity to give all involved more clarity about the stage a disease is in and all that and what can be done to stop the symptoms at an earlier stage.
And that gives the much needed hope to hold on too, next to the actions that need to be taken to get the healing process going and set priorities for both doctors and patients.
I know, the above doesn't mean a fuck if you are overwhelmed by anxiety and emotions that go with all that you see and read and especially you with your long history of bad advises and countless doctors visits, but maybe at one point you find the calm back and look at it from a solving perspective toward the future and know that there is so much more that can be done today than years ago.
Most important is also to be pro active toward the doctors as well. Do not take no for an answer or have them schedule an appointment to far ahead. Don't wait for their call, call and if it takes to long for them to answer, call again. Our body is our body and not an agenda item.
I sent you a link in pm as well. Maybe that gives a bit more insight as well, even though you probably already have it as an experience expert. My thoughts are with you, Nef and Mini. Don't give up hope and don't rule out the advanced medical standards of today. Things will be okay.