Hi there, I'm Dave. I'm 28 years old. A month ago I was diagnosed with Stage 3 SCC of the oral tongue. Biopsies have shown my lymph nodes to be negative, though they and some areas near my clavicle lit up slightly on a PET Scan. Currently there seems to be no major spread, just the tongue tumor. I've been seeing doctors and my treatment has been set for Chemo via Cisplatin & Erbitux in combination, along with Ethyol (amifostine) shots daily in conjunction with 28 sessions of IMRT. They consider this aggressive therapy.

Just this week I went for 2nd opinions at UCSF. They felt surgery might be an option, and the surgeon I saw today felt he could pull it off (tumor is roughly 4 cm2 and extends to "many margins", the first surgeon I saw said no to surgery). He said I'd still need to undergo radiation afterwards with about the same dose. The surgery he said would be 14 hours long with a resectioning of tissue of the tongue from my forearm. He said I'd need a trach for a month or so, and would be in the hospital a minimum of one-week. I'd be feeding through tubes for quite a while and would probably need some speech and swallowing rehab/therapy. This seems daunting to me, but I can't decide if it's the "smartest" move or not.

My gut feeling is to go with rad and chemo. Couldn't surgery be an option after that if the tumor was still present, but hopefully smaller? I mistakenly didn't get that question answered today.

It's so strange to feel totally normal right now knowing I have a potentially life-threatening illness and one that could easily recur after going through all this. I'm trying to stay positive about all this. I really want to keep my tongue intact which is why the surgery seems so unappealing.

I have smoked in the past, but never heavy. I have had my share to drink, yet the doctors say at my age neither were probably a big factor in this. My biggest mistake was not doing anything about this tumor for close to a year (during which time it increased in size by only about 25-50%)...

Anyway, would like hear what people have to say. Any people around my age here with similar problems? Either way, I'd like to hear from people. Has anyone has the tongue surgery, and if so, what was it like in the short-term and in the longer term?

Thanks,
Dave