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I am a 37-year-old white male who has been battling Acinic Cell Carcinoma of the left parotid gland for 7 years now. I discovered a small pea-like tumor in my left face in August of 1998 and then developed fevers, night sweats, an enlarged liver and spleen, and enlarged cervical lymph nodes a month later. I had a cervical node biopsy performed in December 1998 to rule out cancer, and the results came back negative.
In January 1999, I started to be followed by an infectious disease clinic, as no one could figure out what was wrong with me. In may 1999, the tumor on the left side of my face had enlarged in size and a second FNA revealed ACC. I had a parotidectomy performed in June 1999 and had electron beam radiation to my left face from August to September 1999.
In March 2000, I went for a neurological evaluation as I continued to have neurological symptoms that started in 1999 before the ACC tumor had been removed, and the resident at the hospital started asking me about my cervical node mets from the cervical node biopsy from 1998. I told her I did not know what she was talking about. Come to find out, the cervical node biopsy from 1998 showed evidence of cervical node mets from ACC, and after I had the parotidectomy in 1999 the cervical biopsy slide from 1998 was compared to the primary tumor and matched. These results were never revealed to me or my treating surgeon and radiation oncologist. Therefore, this region was never treated.
For the next two years, I saw specialists at numerous hospitals for a plan of action. No one wanted to help me. Then in 2001, I moved back to Boston and in 2002 saw an ENT at Harvard University who ordered an MRI of my neck and face. I had multiple enlarged cervical lymph nodes in my neck. I had a neck dissection which revealed 15 positive lymph nodes in the same region as the cervical node removed in 1998.
Following surgery in 2002, I underwent whole-neck photon radiation and carboplatin chemotherapy. In 2004, I had a local recurrence of disease near my left ear and had it surgically removed. In 2005, I developed a recurrent tumor in the local tumor bed and went to University of Seattle for possible neutron beam radiation. I decided not to have neutrons, as it would significantly decrease my appearance and quality of life and most likely would not cure my disease at this point.
I attempted surgery in July 2005 to remove the tumor to the left cheek region without success. The tumor continues to increase in size, and I am considering cyberknife radiation for tumor shrinkage, however, there is no clinical evidence this treatment will be effective.
Well there's my story. The surgeons say it is a miracle I am still around!