Donna,

I am trilled you surfaced after 15 years! And nearly 10 years of silence here on OCF. I bet you get the record for lowest number of posts in 10 years. LOL

Your feeling about ORN is similar to how I view it and it just seems so little is available to assist those to do as much as they can to prevent or minimize it. Maybe there nothing we can do about the actual ORN but certainly a lot can be done in dental care to avoid aggravating the situation.

Your point about a top rate team to treat the ORN is a good one. What do you recommend to all of us in building a team that cares for our oral cavity to hopefully prevent ORN from showing up in the first place?

This is something just not very clear to me and I have tried to make progress in exactly what specialists and qualities and experience they have to best care for my dental and oral needs.

The advice given to the general public about ensuring their dentist does thorough oral cancer screening is simple compared to what is best for a OC survivor who wants to have the best care post tx, watching for signs of ORN and doing everything to prevent it in the first place.

I'm about 16 months post and still struggle a lot with what even some of these folks do such as a "Maxiofacial Doctor". Just what the heck is this speciality? I know to have a good general dentist to watch for the basic stuff but I want to have others who can support everything odd and unusual that we chemo and radiated OC survivors might experience.

I don't lose sleep over it but ORN is right at the top of the list, even higher than recurrence as I believe there are things one can do now whereas recurrence is in God's hands.