AHA! All I can say is, AHA!
It’s the test I was looking for. It covers all the common cancer genes (including BAP1), it doesn’t report to insurance companies because I pay for it upfront myself, and it’s only $250. That’s not an inconsiderable amount of money, but if there’s a genetic component to this bastard of a disease and I can reliably find out whether my daughter could get it, I’m *there*.
Now that being said, there’s no guarantee that this might not get in the way of getting life insurance, long term care insurance, etc. The GINA specifically exempted those kinds of insurance companies from the discrimination statute. Bastards.
But hey–if my oncologist gives the green light, I’m doing this. And I’ll report on how it goes, what I find out, and all that jazz.
Update: Long story short, my oncologist thinks this test might do me more harm than good. There’s not enough of a pattern to the cancers in my family to suggest that BAP1 is the culprit. She doesn’t think the test would hurt my coverage in any way…but there’s always a chance, and at this stage in the game–the “looking at what all my options cost” stage–risking it simply might not be worth the $250.
Later, when I have my notes in more order, I’ll report on what those “options” cost. You won’t *believe* this crap.