Nice one Rob xx

Good Call Rob!

I have had false negatives with a PET scan and FNA in relation to a cancerous node that was identified as suspicious on a CT scan. The decision when faced with the conflicting information was to remove the suspicious node, do a frozen section, then if it came back positive (which it did), proceed to conduct a selective neck dissection. This was the only positive node, but due to extracapsular spread I then had chemo/radiation.

On the whole I have to say the impact of the ND was not as great as the Radiation.....but I do have a crooked smile!

All the best!

Sue

Rob,

Tough call. let us know how it turns out.

Kelly

Hi Everyone,

I'm facing a very similar decision right now. I finished 35 rounds of Rad on 8/25/09 and I still have PET activity on my left side with some faint 'questionable' ones on my right side (my left tongue was primary). My ENT wanted to do the radiation to hopefully kill everything off so I wouldn't have to endure the ND...but the PET still lights up. Now I'm scheduled for a modified radical ND on the left side on 11/25. I'm scared because I know radiated skin doesn't heal well...and I'm afraid of major nerve damage.

Has anyone endured this post radiation and found it to be the best choice?

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

I just found this 2009 Master's Thesis entitled "Neck and shoulder function after neck dissection" and thought it would be of interest to others here.

http://igitur-archive.library.uu.nl/student-theses/2009-1026-200125/UUindex.html

I haven't read it (yet) myself, so I cannot comment on its contents.

Rob

You guys having the neck dissection - make certain they do NOT take you submandible saliva glands unless there is a real reason to. The guy who did my first ND arbitrailly removes them 'because radiation will kill them anyway'. Not so necessarily. But they definely aren't going to work if they are in the bucket. Check it out.

Take care,
Eileen

Also, another study on neck dissections concludes that if the CT scan shows all clear, the subsequent neck dissection did also.
Arch Otolaryn article on ND
that's why my ENT did not do one the first time around. Interestingly enough, these were all CTs not Petscans

Guess I should add Dick's 2002 experience with the neck dissection. They decided on the ND because 2 nodes were noted / marked on his xrays. However, upon removal of those and other nodes, no cancer was found, which was part of the reason he did not have radiation and chemo (along with the clear margins, lack of spread, small size, and the well differentiated DX). He has regained most if not all of his movement in his shoulders, neck, etc., but still retains a barely detectable numbness by his ear. The negative ND was considered in his treatment plan. It is interesting how some don't need the ND, some have it before treatment, and others, after. He had it done because of the questionable nodes. He lost no salivary function. Don't know if any of this helps or not.

Lots of good comments here -- just a few comments to amplify on some things:

1. My CCC utilized the theory that doing the Neck Dissection first, before radiation and chemo, had the advantages of a)cutting off the metastatic highway immediately; and b)making the surgery itself easier, as radiated tissue is not involved. One doctor explained that since they don't know with certainty how the tumors will respond to the radiation, allowing nodal metastasis to remain in place increases risk of further spread before the radiation can have effect. (Of course, much is dependent on tumor location, etc.)

2. I had both submandibular glands removed in my ND (both negative for SCC). I get along pretty well, but then again, don't know how I would be doing if I had them.

3. Most of the literature indicates that avoiding Level V significantly reduces the incidence of shoulder problems, as the SAN and brachial plexus are less likely to be compromised. I had Level 5 removed on both sides. The price is pretty persistent shoulder pain, some weakness in lifting or holding thigns for extended periods of time.

I can still hit a 5 iron 190 yards, though, so all is good. ;-)