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!

@mimicheryl Thank you for sharing your experience, and I am sorry that you had to deal with so much complications! Heartening to see that you have great spirit and medical team to support you. Prayers for you!