To try to answer a couple of your other questions…
How long have I got left? I think it is entirely variable. It’ll depend entirely on where it is, how big it is, if it has been treated or removed, how impactful the treatment was, perhaps. So to (not) answer the question, I think it completely depends. My own view is that sometimes we can worry about this more than it is worth. We’ve got a rare condition, so focus on that. Then get run over by a bus or die through some so much more common thing. There is a radio advert for a cancer charity in the UK at the moment, citing that 50% of the people we know will get a cancer diagnosis at some point. Half of the people we know. So, I’m just putting it out of my mind. There are a million other things out to get me, too. This life thing is deadly dangerous!
In terms of insurance, I have a young relative with a genetic condition. If they were to get to 40, it would be a complete miracle. Their parents realised very early on that they would struggle ever to get insurance, so rather wisely started putting aside a pot for when more significant hospital time would be required. I’ve no idea whether they ever got to a decent sum but that was their strategy for putting something in place, given the b*stard insurance companies’ approach to zero risk.
Are you saving for a pension? I don’t know how tax and pension contributions work in the US but in the UK, it is a great idea to fund into a proper pension scheme with the right options for a future salary, spouse / dependent pension and/or ability to take a lump sum out of the pension at some point. In the UK, pension contributions are before income tax, so a really great way to get value out of your income for a later date. Obviously, it’s a form of insurance, so starting a new scheme might give you some or all of the obstacles you’re already facing but it may depend on the scheme; and if you’ve been contributing into a scheme since a young man, you may be able to up your contributions to that without triggering new conditions.
Hope any of this helps,