Does anyone have ACC Adenoid cystic carcinoma

Hello @731 and welcome to the Head and Neck group. ACC discussions appear to be rare however you could simply enter "Adenoid Cystic Carcinoma" in the search bar at the top which will take you to a discussion going on back in 2018 and a few others.
As with most of these facial and neck cancers, the treatment damage can at times seem worse than the cancer itself although it will eventually resolve. Many of us here have had surgery and radiation to our "noggin" so in that respect there are many here who can help with coping with the results of that battle.
But let's hold out hope that there is someone currently active and/or you could simply respond to anyone from your search feeds of ACC and perhaps they will alert to the notifications they might receive. Just respond directly to the actual post or response comment block and that person then can be alerted, or send them a private message. It sometimes takes a few days for responses to fire up. Be patient-patient. Hard to do when you are frightened by a diagnosis as I know full well.
Recent diagnosis? What say your physicians about path and prognosis?

I was diagnosed with ACC with NOTCH1 mutation. A rare subset of an already rare cancer. I had partial glossectomy, removal of the floor of my mouth and radical bilateral neck dissection with removal of 17 lymph nodes. Prognosis was said to be poor. The results of the surgery with damage to nerves leaving me with constant nerve pain and not able to eat does seem worse than the cancer. Where I live the doctors are not experienced with ACC and I just feel lost.

ACCRF is a great resource - pls check it out. There is a very active group of folks who offer insights based on experience.

Please go to MD Anderson in Houston. Try to see Dr Renata Ferraro, her specialty and research is in ACC. I went two weeks ago and got lab work, CT scan plus saw her in the same day, my first visit there. Also she called in two different research PhDs to start studying me. I also had a MRI. There is a hotel connected to the hospital and right at her office, lab, imaging center, just walk across skywalk. Hotel is the Rotary House, cost $146 a night. My ACC has moved to my lungs, stage 4. Bless you, thoughts and prayers are sent to you

@731, in addition to the helpful replies you've received from others, I'm tagging @kjwilson23 @kjwilson23 @badfish @mnmike @rubagaddal who may have additional experiences to share.

731, is a feeding tube an option for you to avoid the pain of eating?

I had a feeding tube for about 2 weeks, due to the surgery I had. It wasn't a problem, except towards the end my throat was extremely sore and so was my nose where the tube was stitched to. Feeding tube was my only choice.

I’m sorry to hear that it is in your lungs now. I had my surgery at MDA in 2022 and have been trying to get treatment near my home but unfortunately I haven’t been able to find a doctor with any experience with ACC and I also have the NOTCH1 mutation so it is more aggressive and I can’t even get them to do scans. I have a new lump in my throat and ct From another doctor shows spots in my lungs 7 months ago but they won’t do another scan. I really can’t afford to go back to MDA. I’m just trying to figure out what to do.