Hi John and welcome back to OCF!

I'm in the unlucky 10% of those that get oral cancer for an unknown reason. I never smoked or used any tobacco products, moderate drinker (none now) and HPV-. My cancer was on my right lateral tongue (both times).

My doctors and dentists mentioned chronic irritation, but none of my teeth had any issues in that area. To be on the cautious side I had night guards made (upper one time and then a lower - or could have been the lower first) and also another appliance to wear during the day on my lower teeth to minimize any irritation to my tongue that could have been caused by a rough tooth. Some doctors suggested a genetic predisposition, but I do have a lot of blood relatives and very little cancer in the family (no oral cancer at all). So what caused mine is truly a mystery.

Since RT, I've had dental issues (4 loose lower front teeth) which required removal and had a 10-tooth bridge made as a replacement. I'm still having issues because now my bite is off and it has been difficult and sometimes very painful to eat. A few months ago I cracked a molar (upper left) because of my bite not aligning properly and had that tooth removed. I cannot chew on my right side, so that missing molar is a problem.

I have a consultation with an orthodontist later this month to see about getting braces for my upper teeth. I had consulted with a different orthodontist last year while in the process of getting the lower bridge made, but to be honest he was not at all helpful. I'm hoping the Invasilgn braces are an option as my month is still very sensitive and I believe regular metal braces would irritate it too much.

Over the years I have meet many oral cancer survivors, and the majority (80% or more) of them fall into the non-smoking, non-HPV category. So I am somewhat skeptical of the often quoted statistic that only 10% fall into the "unknown" category.


Susan

SCC R-Lateral tongue, T1N0M0
Age 47 at Dx, non-smoker, casual drinker, HPV-
Surgery: June 2005
RT: Feb-Apr 2006
HBOT: 45 in 2008; 30 in 2013; 30 in 2022 -> Total 105!
Recurrence/Surgeries: Jan & Apr 2010
Biopsy 2/2011: Moderate dysplasia
Surgery 4/2011: Mild dysplasia
Dental issues: 2013-2025 (ORN of lower jaw)