Hi Belinda,

We seem to be on the same schedule. I completed 36 IMRT treatments on 8/26/09 and my ND is scheduled for 12/01/09. I too was hoping to avoid ND.

However, we're different in that your PET is positive while mine is negative. Still, I'm proceeding with surgery and, if I were you, I'd choose the surgery too. If your N2 disease had "completely resolved" then surgery might not be needed; but it hasn't "completely resolved". Why? Because this phrase means two things: (1) it means that the nodes remaining in your neck have shrunk to substantially less than 2 cm in size, and (2) they show up negative on a PET. Although my nodal mass was negative, it was too large. In your case, I don't know the size of your nodes but you've told us they are positive. For both of us, the statistics indicate a high chance of recurrence in the neck - probably around 30% - and such a recurrence would be a death sentence. But if you get the surgery, the chance of neck recurrence is much smaller, probably around 5%. Here are some links to research papers:

http://www.ncbi.nlm.nih.gov/pubmed/19572281
http://www.ncbi.nlm.nih.gov/pubmed/17520763
http://www.ncbi.nlm.nih.gov/pubmed/19031407
http://www3.interscience.wiley.com/journal/121606510/abstract
http://www.ncbi.nlm.nih.gov/pubmed/15555975
http://archotol.ama-assn.org/cgi/content/abstract/126/8/950

You are right to be afraid of nerve & muscle damage. Its quite possible that they'll remove your Spinal Accessory Nerve (SAN) and your Sternocleidomastoid (SCM) muscle. In this (worst case) scenario, your shoulder will droop and you'll have difficulty reaching for something over your head (e.g., it will be difficult to get a heavy jar down from a high cupboard)... but you'll still be able to do yard work and to play the piano (you may need to take lessons first ;-). Talk with your surgeon and see if he plans to try and spare the SAN and the SCM muscle; if he says he's not going to spare them, go get a second opinion from another surgeon. Some surgeons are rather callous and just take these out unnecessarily because its easier (and faster) for them to get to the lymph nodes; other surgeons carefully take their time and try to spare them. Notice I said "try". Nobody will give you a guarantee; it will depend on what they find when they open you up. For example: once they begin surgery they'll send biopsies to the pathology lab and, if those biopsies show the presence of viable cancer cells, it may be necessary for them to remove the SAN and the SCM muscle to be certain that they get all the cancer out.

There are 5 levels of lymph nodes. My surgeon tells me he plans to remove Levels 1, 2A, 3, and 4... he "might" remove Level 2B... but he probably won't remove Level 5. Everyone is different so what the surgeon plans for you depends on where your disease is located. The "standard" ND procedure removes all of these levels.

http://en.wikipedia.org/wiki/Neck_dissection

I'm told the surgeons cannot avoid cutting some of the more minor nerves; this just goes with the territory. As a result, one usually experiences numbness in the face and neck. Fortunately, I'm told these nerves grow back over time; so the numbness is likely to go away after about 6 months.

Good luck, Rob


Dx: T1N3M0 Stage IV SCC Left Tonsil HPV16+

CT 3/20/9. FNA 3/24/9. Panendoscopy 4/1/9. PET/CT 4/22/9
9 wk IC (TPF) 4/25/9. Port 5/11/9 removed 6/4/9 (clot)
7 wk CRT (IMRT; Carboplatin & Taxol) 7/8/9. PEG 7/9/9
CT 10/19/9. PET/CT 11/2/9. ND 12/1/9
6 wk CRT (IMRT; Erbitux, Carboplatin & Taxol) 1/6/10