63stratman's Journey with Acinic Cell Carcinoma

Found lump in front of left ear. CT scan couldn't tell if it was benign or malignant. Fine needle aspiratin (FNA) was inconclusive, but showed no malignancy. Found out later, FNAs for this kind of cancer are relatively worthless. Luckily I had one of the foremost parotid cancer specialists in the world and he scheduled me for surgical removal.

Long (7 hour) surgery. Surgeon found a well-encapsulated 2cm tumor deep in parotid. He had it removed successfully and was preparing to close it up (thinking it was benign) when the pathology report came back with the diagnose of Acinic Cell Carcinoma, Papillary Cystic Variant. He then removed a number of lymph nodes and then closed me up. All lymph nodes were negative.

Had 28 days of IMRT with almost no side effects.

Surgery left clear, but very narrow margins. This prompted the surgeon and radiologist to recommend radiation. If I had been a young person, I would have probably refused, due to the odds of a secondary cancer.

I have followed my surgeon's recommendation for yearly full-body CTs and PET scans. However, there are mixed opinions about this in the medical community. Being such a slow-growing cancer, many specialists do not recommend PET scans. Also, the amount of radiation recieved by yearly CTs and PET scans is worrisome. But, partly due to the extensive experience of my surgeon, I followed his recommendation and had them.

Approaching the 5-year mark and the cancer has not returned.