My husband was dx with oral cancer, stage 1, in spring of 2012. In May he had surgery to remove the tumor (along with a sliver of tongue) and a "Frankenstein" slit to remove lymph nodes from neck. All margins were clean---no more cancer. It took him some time to start really feeling somewhat better and he never felt the same as before surgery.

In November he found another spot on his tongue and it was another SCC tumor. Because insurance was changing in January, we had to jump through hoops to find which doctor could see him in December AND continue seeing him in January. He saw the MO in mid-December but could not get into the RO until late December. Then we had to wait for insurance approval and a patient assistance grant before they would start treatment.

He started on 1/28 with Radiation & 1/29 with "Chemo" which is really Erbitux infusion & not typical chemo. He has the infusion once/weekly & the rad every day.

I am the "caretaker" but mainly in the form of trying to keep his nutrition up. He is still working full time as a computer technician for a Medical group here in San Antonio. I am a stay at home home-school mom with my own list of medical issues, so I only work 2 self-employed businesses when I can (in other words, I don't make any money right now!LOL!).

Like everyone else the biggest challenge is finding food he can tolerate & meds/supplements to ease the pain in his mouth/throat. Of all the crazy things, almond oil seems to soothe his throat as well or better than the "Magic Mouthwash" mix with lidocaine. I try to make him drink a milkshake with Boost in it at home daily. He seems to tolerate that, still, so if he can find foods he can tolerate, we hope to avoid a tube. I did tell him if he needs a tube, he needs one, but still hope he doesn't. We both need to lose weight, but he really shouldn't lose any weight now (and I prefer not to have the cancer diet---as I also told a friend during her chemo a few years ago).

We have no known cause of this cancer. He rarely drank alcohol pre-cancer (none now of course), never smoked (did chew tobacco but it was about 35 years ago), and is HPV negative. The doctors have suggested it COULD be from some chemical exposure. He worked in aviation for several years and was exposed to avgas for the planes. Prior to that, he worked as a grounds keeper, so who knows what pesticides, etc., he was exposed to. I've also read that some researchers think that alcohol based mouthwashes could contribute to the cancer, but no clear evidence on that. Just to be safe, we'll avoid that in the future. Kind of like having triple negative breast cancer. There is no way to eliminate something if you aren't sure what the cause is. Thankful that it was caught so early so hopefully this treatment will kill any potential cancer cells.

If Phil had written this it would have been about 3 sentences long. Sorry to be so wordy! I'm glad to have found this active forum. As I've looked for answers to questions, it seems that other forums came up that haven't been active in years. I'm already encouraged by some of the posts I've found here!