Juvenile Nasopharyngeal Angiofibroma (JNA)

Location: Ontario-Canada. My 16 year old son has been suffering from regular nosebleeds (2/week) for a couple of months, but has always had issues with more nosebleeds than usual. Otherwise healthy for a 16 year old (5'11, 165lbs), no medications, regular activity (plays on multiple sports teams - volleyball/ultimate and active in individualized sports - downhill skiing/waterskiing/wakeboarding, and is a high level gymnastics coach). In our small town (closest larger city with hospital is Peterborough) there is not an overly social group of friends, so no concerns with drinking/smoking/recreational drugs. While having a dx of kidney/renal agenesis since birth, this has never been an issue. As a child he had multiple ear infections, and tubes put in. Was followed by an ENT until aprox age 12 (was checked for nosebleeds at that time, but ENT didn't find any blood vessels, so declined cauterization. Not other findings noted at that time.

Yesterday went to a new ENT (as we moved cities), who did a scope and came back with a preliminary diagnosis of Juvenile Nasopharyngeal Angiofibroma (JNA). She ordered a CT scan. We are awaiting an appointment for that.

I didn't ask too many questions to the ENT yesterday when she diagnosed, as I think I was still in shock with her diagnosis.

Given from what I have read, this is an extremely rare diagnosis.

* How likely is the ENT's diagnosis with only the scope?
* If it is correct, what are the next steps and timelines I should expect (the ENT receptionist said that the CT scan wait time is usually 4 weeks)?
* Would this be referred to a Toronto hospital for treatment or treated locally?
* What are the restrictions and limitation or preventative measures needed to be taken now?
* What is the recovery timeline, and what R&L are generally expected for what duration?
* What other questions should I ask, or things that I should be aware of?
* Any other comments / suggestions or calming suggestions (I have downplayed the dx to the family as to not have everyone freaking out... so carrying this stress myself).