I'm in this fun loop right now where I have an undiagnosed small mass. Everyone agrees the best way to diagnose it would be with an MRI, but no one knows which kind of specialist to have order the MRI or what kind of MRI to order...because we don't know what kind of mass it is. We know it's near a few things, like my lungs and my spine, but it's apparently not connected to them ("apparently" in reference to the cardiac MRI that picked it up incidentally). Everyone who has seen it (original MRI reader, cardiologist) is defaulting to "PCP should order," but PCP doesn't know what to order.

Meanwhile I'm sitting here saying it's asymptomatic, very small, "nonaggressive," "well-circumscribed," and incidentally discovered. Can't we just ignore it? We'd never have known about it but for this unrelated test.

But no. Everyone agrees we oughtn't do that. They just don't know what we ought to do instead.

The system is hard enough to navigate when you're brighter than average and generally well. I have no idea how they expect people to do it when they're ill and have no idea how to read medical research.

ETA: I'm only in this situation subsequent to my sister's idiopathic sudden cardiac death. Medical examiner's report recommended any siblings or offspring be screened for heritable cardiac channelopathies. She had been called a hypochondriac from the time she was 12 until she died suddenly at 29 and surprised the heck out of everybody.