Adenoid Cystic Carcinoma survivors?

Hello, I also have adenoid cystic carcinoma that took about 2.5 years to diagnose. It started with upper facial paralysis and a visit to an occuplastics doctor due to serious effects on my eye that ceased functioning properly. He ordered lots of blood tests and an MRI to rule out a variety of diseases, tumors, etc. The MRI indicated an inflamed parotid gland. Over a 2 year period of consulting with 4 highly regarded ENT professionals, neurologists, PT specialists and others my "Bell's Palsy" began to progress to my lower face and I started to get shooting, burning and stabbing pains in and around my ear and face. When one of the highly regarded ENT specialists was out on maternity leave, my facial PT doctor referred me to a plastic surgeon. She was the first doctor who took the time to explain what Bell's Palsy was and she was the only clinically curious doctor I had met. She ordered another MRI and nerve study. It took a bit to get those scheduled but eventually I had both tests. The MRI showed an infamed parotid gland just like the one 2 years earlier. Nerve study showed upper facial nerves to be non functioning but some function in the lower face. The best option to restore function and symmetry to my face was a nerve transfer. In June I agreed to the procedure in hopes of restoring movement along with a few other cosmetic procedures for opening my eye and lifting my drooping face. I woke up from surgery to my surgeon's kind and compassionate face telling me that she found my facial nerves to be malignant due to cancer of the parotid gland. Diagnosis was adenoid cystic carcinoma; a rare but slow growing cancer. A whirlwind of medical consultations, appointments scans took place and in mid August I had a long complicated surgery that required reconstruction of my face that required something called a free flap and graft to rebuild the structure of my face. It's been a challenge physically and emotionally to deal with my significantly altered face and function. I am ever so grateful that I got a consultation at Mayo as well as Barrows here in AZ for radiation therapy. Later today I will have my first radiation treatment followed by another 6 weeks of therapy. Since my cancer is considered high grade and advanced it was recommended that I consult with a chemo radiologist at Mayo. While I remain resistant to chemo I did agree to meet with one of the kindest doctors to hear what he had to say. He was honest, compassionate and I felt he agreed with my decision to forego that additional treatment. I'm not chronologically young, I act and feel 20 years younger so I'm not willing to sacrifice the quality of my days for the number of my days. This specialist mentioned that he has been carefully following a number of patients with our same diagnosis for about 10 years. I think careful monitoring of your specific cancer is the key to survival. I would imagine that your doctors will continue to test and make sure they are being proactive in your care. So far, I feel that I'm in the very best hands by choosing to start my radiation and all future care with the outstanding doctors, nurses and support staff at Mayo Clinic. I wish you the best moving forward and will look forward to reading other's experiences with our shared diagnosis!

Acc tumor diagnosis Feb 2026. Investigated a small fleshy bump on side of my face between the tmj and ear opening the size of a pea and was there for more than 8 -10 years. Several drs. Checked and dismissed it because “there’s no vital areas or veins in your neck that coincide with this” went to ent and was told “it’s suspicious let’s do a sonogram, came back inconclusive and he needed an mri. Did that and while waiting called Msk in Nyc and immediately made an appointment.
Before I got the results back I was already at the appointment in nyc. They read the MRI results and immediately ordered a 4 needle biopsy. That came back as Adenid cystic carcinoma.
3.5 cm X 2.3cm x 1.5cm. Residing mostly in the lower lobe of the parotid gland and protruding thru the superficial area (hence the pea sized bump was the tail) and wrapped around the TMJ and touching the ramus. Scheduled complete Parotidectomy at end of April 26’ with thigh flap and neck revision. Perfect health 58 year old with no comorbidities and only took Tylenol for any issues.
After a 12.5 hour surgery (successful) and hooked up to a machine to insure blood flow was good in the thigh flap, a 5 day hospital stay and I was released back home.
No lie recovery was grueling and radiation (adjunct ) was designed and I started it June 16th and finished it July 28. 30 sessions total. I was healing beautifully from the surgery and both sites were and still are healed. Some pni was noted but the tumor “fell off the bone” and no bony structures affected. 31 nodes removed all benign. No carotid sheath affected. No skull base and extremely localized tumor. Clear pet scan as well done in June after the surgery showed again super localized tumor. Radiation was a must to insure all this suffering was worth it. Pathology was amazing as stage 1a. The size was large enough for a stage 2-3 but the histology and fact that it was living inside me almost 10 years that I was aware of showed the least aggressive kind. No solid components. Only cribiform/tubular. The lesser aggressive version of this super rare cancer. Every single patient experience is different. It’s simply too rare and not enough current documents to be shared to help update what’s generally not a great prognosis. To help others here understand they need to find out every aspect in their specific pathology to get a good understanding of long term possibilities. There isn’t much relevant new info as the data is from many years ago up until early 2020s.
Also I had no facial nerves affected and surgeon specifically went over all the nerves and I didn’t lose much in the way of speech or droop. At 90 days post radiation I finally started to feel the after effects of head and neck radiation. I now go to a lympedema physical therapist 2x a week and thru it all I went back to working only 3 days a week 5-8 hours a day about 3 weeks post surgery. I took a month off in June because radiation was grueling daily and nonstop. But then came back around and started working again early to mid August. Some days I’m shot fatigued but push thru. Every morning since my surgery I have 2-3 fresh farm eggs either hard boiled gently or scrambled in omelet w cheddar. A pint of blueberries. Some yogurt and some cottage cheese. Also a slice of whey toast with butter and a cup of fresh ground beanies coffee. Not taking any supplements currently but would like to after my first big scan in mid November.
I really want to share some positivity here because there has t been many places to get some realtime now situations to learn about. I also was fitted with a special face garment to help re route the fluid that accumulates a little on the lower left mandible under the chin and I wear it 4hours a day and it’s helping to reshape my neck and chin. As a child parent I grew up in a household where I had to take care of my mom who had MS and only had one older brother so we both did more than average kids. That’s why I’m not fazed as much by this crappy disease and the luck that I had to get it. But I am blessed that the treatments are working and did work and I retained my face and speaking and eating and swallowing. I also use a 5000ppm flouride special toothpaste as radiation caries is something anyone who has had head and neck radiation must be strict about protecting their teeth and oral health.
Hoping this may help some people in this forum as it’s the only one I ever joined.

Hello, I also have adenoid cystic carcinoma that took about 2.5 years to diagnose. It started with upper facial paralysis and a visit to an occuplastics doctor due to serious effects on my eye that ceased functioning properly. He ordered lots of blood tests and an MRI to rule out a variety of diseases, tumors, etc. The MRI indicated an inflamed parotid gland. Over a 2 year period of consulting with 4 highly regarded ENT professionals, neurologists, PT specialists and others my "Bell's Palsy" began to progress to my lower face and I started to get shooting, burning and stabbing pains in and around my ear and face. When one of the highly regarded ENT specialists was out on maternity leave, my facial PT doctor referred me to a plastic surgeon. She was the first doctor who took the time to explain what Bell's Palsy was and she was the only clinically curious doctor I had met. She ordered another MRI and nerve study. It took a bit to get those scheduled but eventually I had both tests. The MRI showed an infamed parotid gland just like the one 2 years earlier. Nerve study showed upper facial nerves to be non functioning but some function in the lower face. The best option to restore function and symmetry to my face was a nerve transfer. In June I agreed to the procedure in hopes of restoring movement along with a few other cosmetic procedures for opening my eye and lifting my drooping face. I woke up from surgery to my surgeon's kind and compassionate face telling me that she found my facial nerves to be malignant due to cancer of the parotid gland. Diagnosis was adenoid cystic carcinoma; a rare but slow growing cancer. A whirlwind of medical consultations, appointments scans took place and in mid August I had a long complicated surgery that required reconstruction of my face that required something called a free flap and graft to rebuild the structure of my face. It's been a challenge physically and emotionally to deal with my significantly altered face and function. I am ever so grateful that I got a consultation at Mayo as well as Barrows here in AZ for radiation therapy. Later today I will have my first radiation treatment followed by another 6 weeks of therapy. Since my cancer is considered high grade and advanced it was recommended that I consult with a chemo radiologist at Mayo. While I remain resistant to chemo I did agree to meet with one of the kindest doctors to hear what he had to say. He was honest, compassionate and I felt he agreed with my decision to forego that additional treatment. I'm not chronologically young, I act and feel 20 years younger so I'm not willing to sacrifice the quality of my days for the number of my days. This specialist mentioned that he has been carefully following a number of patients with our same diagnosis for about 10 years. I think careful monitoring of your specific cancer is the key to survival. I would imagine that your doctors will continue to test and make sure they are being proactive in your care. So far, I feel that I'm in the very best hands by choosing to start my radiation and all future care with the outstanding doctors, nurses and support staff at Mayo Clinic. I wish you the best moving forward and will look forward to reading other's experiences with our shared diagnosis!