This is pretty much a no-brainer. The hard part is often convincing a new EHE patient that it's OK to seek another opinion....or finding the right person for giving that opinion.
The key is that EHE is so rare, virtually only a handful of doctors in the US have sufficient experience to be considered 'expert'. Therefore, as every experienced EHE patient knows, you MUST strongly consider getting a second opinion, unless of course your primary doctor is one of the small cadre of experts (what are the odds?). Moreover, virtually all clinical input is tempered by the knowledge that there is little consensus on how best to manage 'systemic' EHE. This is a term I just invented. I don't like the word metastatic since it carries an intention and meaning that applies to other cancers but not EHE since the number of organs involved doesn't really impact outcomes - this is substantiated in at least two published studies (Lau et al, Chest, 2011; Thompson et al HPB, 2013); in fact in the latter, five year survival was improved in 'metastatic' vs single sight disease!). So, lets call it systemic when it involves more than one location....now back to the topic at hand.
Most people with the diagnosis of EHE were originally told they had something else. This misdiagnosis is nearly always uni-directional. That is, people with EHE are given several wrong diagnoses before learning the truth. Almost no-one is given the diagnosis of EHE then told they have something else. Once having gone thru the wringer with an incorrect diagnosis (or many) and before they start making recommendations for treatment...the first thing the newbie should do is CONSULT AN EXPERT FOR A SECOND OPINION because the initial doctors just don't know enough about this rare disease. I mean, it's no knock on them but it's highly unlikely they've even heard of it, let alone seen it, before.
Finally, one important goal of identifying a small cadre of such experts is that together, in the aggregate, they generate an ever-expanding data base of knowledge that just isn't possible for 'singlet' oncologists, let alone primary care docs. This is the same goal as the registry and why we should 1) identify all the willing 'experts and 2) involve them all in posting to and using the registry.
Capiche?!!! Verstehen Sie?? Comprenez-vous?? Вы понимаете?
Now do it! No excuses!!