Hi there - I was diagnosed with a malignant ACC in 2016. I was told it was very rare but I've never been told its incurable. My doctors always told me it is slow growing and can spread along nerve endings to the liver or the lungs. I was told the disease specific survival is high at 5yrs but decreases fairly dramatically after 5 years. I will get a head and neck mri and chest ct scan every 6 months for the next 5 years. I had 6 weeks of daily radiation therapy that was very very rough. I stopped eating, was nauseous a lot and lost a lot of weight. I lost my sense of taste and smell and a little bit of hearing loss. Post surgery a part of my reconstruction failed to heal correctly and an oronasal fistula developed. That is basically a hole in my hard palate that allows for liquids and food to enter my nasal cavity. This causes a chronic sinus infection and nasal leakage. I had a 2nd surgery to attempt to close the hole but that didn't work. I then was referred to a prothodontist who makes prosthetics for the mouth. He made me an oral opturator to block the whole but that hasn't worked either. I've just joined this forum to find out what others experiences were and if they had any luck with successful treatment of an oral fistula.

Ask me any questions you like. Hopefully I can help.