Jeff,

Thanks VERY much for your Comment #3. I had not heard this (and, I'd be delighted if you can point me to some of that literature). Fortunately for me, there are no plans to remove my Level 5... so perhaps I need not worry as much about persistent pain.

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Although the Parotid glands are much larger, it seems the Submandibular glands are responsible for 70% of saliva production.

<http://en.wikipedia.org/wiki/Salivary_gland>

My impression is that RO's have traditionally worried most about collateral damage to the Parotids but rarely gave the Submandibulars much thought. However, I think that has been changing the past few years... and I've seen a few articles linking preservation of the Submandibulars to higher quality of life (and, in particular, less xerostomia). I think the Submandibulars have an important functional role that should not be discounted.

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I did a lot of research seeking ways to try and preserve my salivary function but, in the end, gave up and accepted the recommendations of my medical team. Some of the ideas I explored (to varying degrees) included:

a) Tomotherapy. This is a new device technology that is capable of more precisely targeting the radiation that current IMRT technology. Thus, in principle, one can reduce the collateral damage to healthy tissues. However, I believe one needs an RO (and associated specialists) who is VERY highly experienced in treating H&N cancer via Tomotherapy and I could not find one that I deemed satisfactory. If the choice is better tools vs better skill in using the tools, I'd choose the better skill.

b) Amifostine. I got into big arguments with my MO about this as I persistently pestered her about using this. In the end, she (and my RO) flatly refused to give me Amifostine. Her initial arguments were all about the nasty side-effects of Amifostine but, as these would be temporary, it seemed to me worth going through if it might preserve my salivary function. A stronger argument was that those nasty side-effects might interrupt (and thereby reduce the efficacy) of my chemoradiation treatment; but still I felt it should be possible to at least try Amifostine and then stop using it if the side-effects became severe. In the end, I was convinced by a close reading of the most recent ASTO guidelines; these guidelines said Amifostine was not recommended with chemoradiation treatment due to the lack of evidence for its efficacy. Some studies they cited did find that Amifostine was effective, but such studies were discounted because they were not placebo-controlled; the larger placebo-controlled study they cited showed no greater efficacy than placebo. (Whereupon I asked if they could just give me the placebo ;-) [Note: ASTO guidelines did say Amifostine could be considered when radiation-only treatment was planned. It was only for chemoradiation treatment that they recommended against Amifostine.]

c) Submandibular Gland Transfer. This is an unusual surgical procedure pioneered by a Canadian surgeon. The idea is, prior to radiation treatment, to move the at-risk Submandibular gland to the submental space where it would be out of harm's way. This seemed like a very clever idea, but I didn't explore this too deeply because I couldn't delay my radiation treatments any longer and it was clear that it would take weeks to find a surgeon familiar with the procedure, have the surgery, and recover; furthermore, having this surgery might require replanning the radiation treatment (which would take even more time). Later (after my radiation treatment), my ENT said he was skeptical about this and he told me that only the surgeon who developed the procedure has reported success in preserving glandular function.

d) A variety of other ideas that were too experimental to consider seriously.

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There are pros and cons regarding having ND before (vs after) chemo & radiation treatment and different medical teams will offer different recommendations. In my case, we hoped to avoid ND altogether so we started with Induction Chemotherapy and followed that by Chemoradiation Therapy. If that treatment had reduced the huge (N3: greater than 6 cm) nodal mass in my neck to about 2 cm or less, I'm sure my MO and other doctors in my team would have said I don't need ND. Unfortunately, it was only reduced to about 4 cm, so I'm having the surgery.

Rob