I did not have perineural invasion or extracapsular extension in the lymph nodes. I am T2N2BM0. The radiation oncologist recommended a pet scan ASAP to determine if there is lymph node involvement on the left side and to check my lungs. He said he would refer me to an MO to discuss chemo which he said 50% of people choose to do. I guess finding out the results of the pet scan will determine what I decide to do re: chemo.

I was really unprepared for the long term side effects of this treatment. I had no idea that I could permanently lose my taste buds, that I would have all of these problems eating because of that. I have chosen the willfully ignorant means of coping just to keep my sanity. The losing the teeth prospect seems likely only because my teeth already are soft and I have had root canals and the like on some of my molars.

He said that I will feel like I have the worst sore throat of my life and that food will taste like cardboard and/or metallic/iron for a while. How fun! I am running out to have all of the most delicious foods I can now! I will need pain meds for the sores in my mouth. Good grief! I really wasn't prepared to hear that.

Just going through the alternative to living which is death, you have to gain perspective on what you potentially will be left without; loss of teeth, loss of pleasure of eating, loss of ability to chew due to lack of saliva, recurrence. I'm sure there's more crappy things to look forward to.

He recommended I see the heads of head and neck surgery at Mount Sinai Hospital, Cornell NY Presbyterian, and Sloan Kettering. Is this standard? Why wouldn't I see a radiation oncologist to get another opinion? Not sure what I should do in this instance.

I will have more time on my hands now that I'll be in treatment and my kids will have to be in school full time with possible extended care. That will give me more time since I am a stay-at-home mom to fully research. This website has been EXTREMELY helpful and I again thank you all for pointing me in the right directions.

Can I just reiterate that although my prognosis seems positive, i.e. not dying, the thought of not being able to taste food or salivate is truly depressing. I am receiving psychiatric counseling, so no dark dark feelings are coming to light. But still, this really really sucks.

10/2/12 Surgery Dx Stage II SCC RLT
11/12/12 Further tongue resec and SND. 3 of 22 lymph + SCC Stage IVa
11/22/12 Hospitalized for infection incision at neck
12/5/13 PET scan tumor at BOT
12/26/12-2/27/13 RT and Cisplatin
4/1/13-5/17/13 3 rounds of Cisplatin, Taxotere and 5-FU
7/19/13 Pet Scan possible recurrence
8/23/13 2nd op at MSKCC, CT Scan
8/31/13 MRI. Both show sizeable mass
9/11/13 CT-guided needle BX + SCC
10/1/13 Erbitux, Cisplatin and Taxotere
2/14/14 Passed away