@hopeful33250, Thank you for your welcome and the various resources you've suggested. I have spent a great deal of time on the National Institutes of Health and U.S. National Library of Medicine websites. And yes, with thymic tumors having an incidence of only 0.15 per 100,000 population that comes out to about, what, 1 in 700,000 people having such tumors? An especially unique group, for sure.

From the medical professionals (a PA, an Emergency Room doc, a family practice doc) I have spoken with on a personal level (friends, relatives, and friends of relatives), it seems that the deeply involved patient is a pretty rare thing itself. I'm sure some of that can be attributed to a fuzzy familiarity with the diagnosis. I mean, if your doctor tells you "We need to remove your appendix" you may well know someone that has already been through it. And with an incidence rate of 1.1 cases per 1000 people per year and a roughly 99% percent success rate for appendectomies, people don't bother getting into the weeds on the details of what they're about to go through.

I imagine it's frustrating for doctors too, trying to help people when there's so little science and data to guide them. So far, it seems to me that all you can do is try to connect with the doctor you find that has the most experience (which probably is less than you would like), cross your fingers, and climb up on the table. And as you can see, I'm still at the "connect with the doctor you find that has the most experience" phase of my journey.

Okay then. Thanks again and be well.

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