Dec 21, 2013 - 7:38 pm
Since this a rare cancer I will post my story to add to the others.
BTW, thanx to tommyodavey who guided me to this site.
In 2007 a small lump appeared in my left neck. My ENT was not concerned. Now, in October 2013, it had began to enlarge but still no pain. My ENT ordered CT and did FNA. The CT showed a mass in the right side base of tongue. The FNA of the neck mass was diaagnosed as Pleomorphic Adenoma, which is itself very rare.
I had the neck tumor removed by the ENT and at the same time had panendoscopy of the tongue base for biopsy. Pathology of the neck mass this time was mucoepidermoid carcinoma. The tongue base biopsy was inconclusive.(too deep to get tissue). I then went to oncologist/radiologist who recommended slides be sent to MD Anderson, Houston. He was hoping that it was actually SCC which could be treated with chemo/radiology since the BOT tumor was still small (2cm). Meanwhile I was reading a lot and the TORS procedure looked good to me.
MDA confirmed the mucoepidermoid for both the neck mass and the BOT biopsy. This changed the treatment plan. Since MEC does not respond to Chemo, surgery was recommended. I was sent to Baylor All Saints for consultation. Well, TORS was ruled out due to the location of the tumor, 2cm embeded deep in the right side of tongue base. Open surgery was to be done in which the chin bone is divided, the tongue base is retracted, then the tumor removed. Reconstruction will involve metal plate secured with screws in the chin. Other tongue work may be needed as well.
Surgery is set for Jan 8. I am busily getting teeth checked, speech/swallow appointments, cardiolgist
I have not used tobacco for 50+ years. I do not abuse alcohol. I am male, age 75 in general good health. However, in my late 20's I worked for Texas Instruments building Radar based weapon systems for USAF. My job entailed final checkout where the equipent had to be transmitted at full power. We knew the danger but at 25 you are invincible. This may be it.
The surgery sounds gruesome but I was warned it was the radiation that would do the most damage. At 75, I would prefer less radiation and accept the increased risk. IDK. (Hey, I still have no pain or symptoms, but I was toold it would not last)
Comments are appreciated ...