Hi. I am Joan @731. I had Adenoid Cystic Carcinoma ACC is the sublingual salivary gland with NOTHC1 mutation so it is very aggressive and rare form with “poor” prognosis and recurrence or metastasis usually within 3-13 months. My surgery was 19 months ago at MD Anderson. My doctors did not recommend chemo since research indicates it has little to no effect on ACC. I also declined radiation since as they explained radiation has < 10% chance of helping and 100% chance of damaging healthy tissue and life log side effects. I do have extensive nerve damage from nerves being cut during surgery leaving me with constant nerve pain especially in my tongue. Tongue and floor of mouth have been reconstructed with tissue taken from my leg. Free flap is very large pushing my tongue up and back to completely fill my mouth making eating difficult to impossible. Initially I had NG tube for feeding but when that was removed I was not able to eat and only drank about 8 oz. of thickened liquids a day. My weight dropped to 77 lbs. a PEG tube was placed but instead of healing it became so painful it had to be removed and I was left trying to find a way not to starve on my own until I was able to find a doctor and dietician who suggested Kate Farm Sole Source nutrition drinks and gained 22 lbs. I have just recently found a physical therapist and a speech therapist who specialize in head and neck cancer and are helping a lot. I have even begun trials of solid foods. This makes me very happy. Not being able to participate in meals with family and friends is a big social loss.
My currently dilemma is that with constant pain, evidence of “spots” on my lung basically ignored by my oncologist as probably nothing and the research that indicates recurrence and metastasis in < 13 months and an overall mean survival rate of 30 months with ACC NOTCH1 as compared to 122 months with regular ACC my oncologist does not order scans and only brief check up appointment once a year in spite of symptoms including a growing palpable lump in my throat/neck. I can’t find a doctor with experience with ACC in my area (within 380 miles) and I can’t afford to return to MDA or other distant location. I’m just reaching out to see if there is any hope for help if I can get to Mayo.