Hi! I'm new to this site, but my cancer has been part of my life since September of 2005. Though I've done a lot of research, I have never found anyone who is dealing with a chronic recurring oral cancer. I'm in Cincinnati.

It began with squamous cell carcinoma in situ on the left lateral side of my tongue. This was removed surgically. It appeared again in a slightly different spot and was surgcially removed. I had a spot on the left back top part of my tongue that was invasive carcinoma. I had a partial neck dissection and 4 lymph nodes removed. All were clean. I've had granulomas and sqaumous cell carcinomas from in situ to invasive removed over 20 times now. A year or two ago the cancer started to be in the gutter between my tongue and teeth. Recently, the cancer has been on my gums too. My last surgery I need to have part of the tongue excised, 4 teeth pulled and the inner part of the jaw bone shaved in case the cancer had spread to the bone. (It had not, praise God.)

I have been treated by 2 ENTs, a holistic head and neck surgeon and nutritional specialist, and have had consultations with 2 other ENTs, a periodontist who specializes in cancer, an oral dermatologist, a radiation encologist and the head of radiation oncology at Massachusetts General. I have been by these experts that radiation is not indicated at this time and would be difficult to administer because my cancer is a moving target. (One doctor referred to my condition as "condemned mucosa," meaning that the tissue on the left side of my tongue and mouth are always deteriorating toward cancer.)

People ask how often I see my surgeon for follow up, but I've only made it to the 3 month period twice before I've had to see him again for more pain or weirdness in my mouth. Almost always there is cancer present in the tissue removed, though never very advanced.

I am a married mother of 2 girls, ages 10 and 11. I am a children's librarian and tell stories for a living. I'm grateful that, despite the removal of a significant portion of the left side of my tongue and several teeth, I haven't yet had to deal with any real speech issues.

I will be seeing my doctor again on Friday, because I know the cancer is back on my tongue and possibly in the gutter again. Though I've tried to be as positive as possible, I have to admit I'm pretty demoralized by it being back again so quickly. There's not much tongue left to spare, nor teeth on the bottom. I would love to hear from those who have been through this or are going through this. I know you understand.

Thanks so much for listening.
Marie