In April 2013, my oral cancer presented as thrush in my mouth, then it was diagnosed as gingivitis, then oral lichen planus. After 7 trips to my dentist & different diagnoses each time, a biopsy was finally done. This was done in January 2016 and surgery was done in April 2016. I had a 2.5 cm tumor running along my lower left jaw and it had penetrated the bone by this time. Six teeth were removed and the affected bone was shaved off and my jaw supported by a metal strut. I had 6 rounds of chemo and 40 radiation. The cancer came back in 2019 (the doctor had left positive margins in 1st surgery). I traveled from TN to MD Anderson in Jacksonville FL and had fibula free flap reconstruction surgery. I had a 3 cm tumor in my left cheek, a .5 cm tumor under my tongue and 5 involved lymph nodes on the right side. So I was stage IV. Afterwards I had 30 rounds of radiation.

It’s now 2 1/2 years post-surgery and I’m still cancer free! I recently had surgery to untether my tongue on the bottom and I healed quickly. I have a speech impediment now and I must use a chop stick to push food between my molars (I have only 3 molars on the bottom) because my tongue doesn’t have the coordination to move the food. I lost half my tongue.

BTW I never smoked. I didn’t have HPV.

I’m wondering if anyone else is having this difficulty with eating? Do you have any tips to help me? I refuse to eat in public.