I'm not sure if I'm doing this right, but will be glad to share my experience with oral cancer.

In 1992 at age 49, I had what was a visable enlargement of a lymph node on the right side of my neck, which was diagnosed as a lypoma. A year later, it was back, but this time it was Stage III squamouc cell carcinoma. At my pre-op exam, I told my ENT/surgeon that it was getting hard to breathe. He looked down my throat and discovered a golf-ball-sized Stage III squamous cell carcinoma at the base of my tongue. The surgery scheduled for the next day was postponed and a full body scan done to see if it had metastecised. It had not and the next week a radical neck disection/resection was done, cutting from behind my right ear, down along my jawline, up my chin through my lower lip, down from right ear to end of right shoulder. The jawbone was cut through and a titanium plate with 6 screws were installed to hold my jawbone together. I don't remember a lot about the surgery itself except that I had excruciating headaches while in the hospital. I had 6 weeks of radiation which I tolerated well. Biopsies showed 4 of 16 lymph nodes were malignant and removed. I had only smoked about a year and after seeing my father, my surgeon said mine must have been hereditary - we had identical facial scars from same surgery although his was primarily in the roof of his mouth. He was a heavy smoker and drank alcohol - and 3 of his brothers also had oral cancer with similar surgeries.

Since this occurred, I have been unable to eat anything spicy (even salt) or acidic, which rules out anything with tomato base and almost all fruits.

For 19 years, I did well with checkups and my new "diet," with only an occasional swollen lymph node that caused no problems and went away on their own. I did notice & notify my surgeon on many occasions during the last 6 years that two of the 6 screws were exposed and I was told that one day the hardware would have to be removed when it caused a problem.

On January 3, 2012, that time came. I woke up with a swollen right side of face and excruciating pain. My surgeon ordered a CT scan and followup visit, he said, "We are getting older, we all have pain. My neck hurts." Time to change doctors!

After getting a new young doctor (talk about baptism by fire!), and many discussions with older, more experienced doctors, many scans and oral antibiotics, it was agreed that I had osteomyelitis - the hardware had beome infected and infected the jawbone and that the jawbone was strong enough to withstand removal without shattering. This was done March 1st with minimal further scarring and I was referred to a infectious disease specialist who diagnosed at least three serious bacterial infections and a couple more that were never named because of all the antibiotics taken. A PICC line was inserted and I was taught how to administer intraveneous antibiotics 3x daily at home with a home health nurse coming every Friday to change the dressing. That was an experience I never want to repeat, but am happy treatment is available. I feel that had the hardware been removed at any time during the 6 years I complained about it, the infections would never have occurred. Lesson learned - if you have exposed hardware, have it removed pronto.

I am now on a soft-food diet and was told that my jaw can break with me sitting still with my mouth closed - scary thought! But after I got over the initial shock of that happening and knowing I have limited control over that, I am doing well. My blender is my new best friend. And I'm still here!

God is good and I've lived to the age of 69 and greeted three grandchildren I would never have met had technologist and skilled physicians not been available.

I hope my story of a 19+ year oral cancer survival inspires others who are going through this or have gone through it.

God bless you all!

A lot has been learned since 1992 and it's a shame you had to go thru all of that. Today you would have probably had a fine needle aspiration on that 1st node; had it tested for the presence of HPV; had no surgery; had concurrent chemo/rad and would have recovered nicely.

Welcome to our forum and thanks for sharing your experience.

A fine needle aspiration was inconclusive due to surgery & radiation damage done in area.

The FNA is usually done before any surgery or radiation. That's what I meant to say.

Thank you for sharing your story with us! I am so glad that your grandchildren have the benefit of your love and strength. Best wishs for many more wonderful years!
Maria

Thank you so much for sharing your story. It's always so encouraging to hear from long-term survivors. Bless you, too!