One has to take charge of one’s own care when dealing with the medical establishment.
My own experience is that if you’re a well-informed and energetic advocate for yourself, you can quickly move from the “this is the standard of care” to “ok, we can try something more aggressive.”
Two points: 1) if you’re enrolled in a large managed care plan (like Kaiser), you’ll probably have to go outside of the plan and 2) You’ll need to open your wallet, but usually not as wide as you might expect.
You can get what you need, but you have to push.
yup and you hafe to do your own research
no one else lives in your body
don’t let others permanently screw it up, they won’t care, but you will