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.

==

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.

==

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.

==

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

My situation being different than most of the people on the forum, I think it's time for me to tell my experience.

I had a CT scan before my first visit with my surgeon at Fox Chase Cancer Center (a CCC) which was "all clear". This had been ordered by the oral surgeon in my office that had done the biopsy.

The surgeon told me that in his experience (which is fairly extensive) he has found cancerous nodes in approximately 15% of cases where the CT had negative findings. He gave me my choice, but he recommended the ND in conjunction with the partial glossectomy. To me, this was a no brainer. If he had said 0%, I would have been OK. To me 15% was not low enough.

I have often wondered, if a CT is negative, how long can you assume that it will still be negative, if the surgery is not done immediately after the CT? A minute, an hour, a day, a month???

Again, my decision was a no brainer for me, as my surgery was about 3 weeks after the CT and I didn't want to take any chances. The ND was a cakewalk compared to the glossectomy. My neck is numb, but ask me if I care. I remember the smile I managed after the pathology report said all clear.

Note: I had no radiation and no chemo.

Here is one study that refers to the better experience if Level V not dissected: http://www.ncbi.nlm.nih.gov/pubmed/10764008


Some fairly recent studies have pretty much debunked the theory that Amifostine compromises the efficacy of therapy. I will look and see if I can find them.

I had Amifostine daily before radiation. No side effects for the first 2 - 3 weeks, then began having brief bouts of nausea that would hit with amazing consistency -- would strike when I was walking to the car at almost the exact location. It would generally pass by the time I was out of the parking garage.

Despite having both submandibular glands removed my salivary function is pretty good.

Rob,
I'm pretty analytical like you. I find your threads very helpful for me. I'm going through IMRT CRT right now and am already starting to look for a good surgeon in case I need to move fast after treatment.

Thank you for posting this info and your experiences.

And most of all, I wish you the best.

Joel

Rob,
My thoughts and best wishes are with you on your surgery. Please keep us updated on how you are.

Regards,
Joel

Hello all,

Sorry I haven't been around for awhile... and that I don't feel up to responding to all questions put to me... but I thought I'd share how my surgery went yesterday.

In brief, the outcome was not as good as I'd hoped. But it was certainly the right thing to do... as I would most definitely have had a recurrence if I didn't have this surgery.

The surgeon found tissues that were still infected by SCC. As a consequence, he took out Levels 1-4 (including both 2A and 2B), and I think he took out a good bit of Level 5, as well as the accessory nerve and the sternocleidomastoid muscle. He also removed part of my Parotid gland and I think he took a few biopsies as well. The full pathology report will be available next week and I'll need additional discussions before I fully understand it all... but I think he said that the nodal mass shrunk in a haphazard manner (like swiss cheese, with holes in it) such that some cancer cells may not have remained encapsulated and could be floating around the area. Of course, they would be below a level that would be detectable on a PET scan... but he suggested that additional radiation treatment may be in order and, to support that possibility, I think he said he left behind some sort of ring of vascular clamps (which I think are like sutures that dissolve over time) around the area of concern to serve as a target for the RO.

So now we know a lot more than we ever could have learned from non-invasive techniques (like PET scans). My medical team will review the results over the next few weeks and recommend some next steps... but its now fairly clear that I'm not yet out of the woods (even though the surgery was a step in the right direction).

At the moment, I'm still in-patient and just need to focus on recovery.

Rob

Hang in there and lets pray they got it all.

What caused the surgery in the first place? Was it because a node didn't shrink all the way down from the initial rad?

Rob,

Hang tough my friend.

Kelly

Steady recovery, Rob

Thanks all. They let me go home today. That's a nice step in the right direction. I see my surgeon again Wednesday when I'll get my staples out. I was pleased that my MO came in to talk with me last night; she and the rest of my team haven't had much time to confer yet... and the pathology report won't be available until Tuesday. I told her I feel we're now moving into uncharted territory where I'll need to rely very heavily on their experience & advice. She said I've received the entire spectrum of treatment; nothings been left out simply to make my life easier. Normally there is no further treatment from here, but she said they will discuss the possibility of extra radiation. My MO also said she went over the PET/CT scans once again and confirmed they didn't show much FDG uptake; hopefully the pathology report will be illuminating.

BTW: My surgeon said he sent my tissue samples from the OR to the pathologist and then spoke with the pathologist by phone. My surgeon asked the pathologist if he was CERTAIN there was SCC present and the pathologist responded affirmatively before he proceeded to remove my accessory nerve and SCM muscle. My MO said my surgeon told her he felt the cancer may have invaded the SCM muscle. Also, my surgeon told me that, while he felt the surgery itself went very well and was a success, it was a difficult procedure... he spent nearly 4 hours in the OR where he would normally spend only 2.5 hours... and he's concerned for me clinically.

David: I had the surgery because the mass of lymph nodes in my neck didn't shrink enough. It was over 6 cm (N3) before any treatment. Then I had Induction Chemo (9 weeks, 3 rounds, TPF) followed by ChemoRadiation (7 weeks, IMRT with weekly carboplatin and taxotere). This shrunk the mass to 4 cm... if it was less than 2 cm, they would have deemed it a "complete response" and not recommended surgery; but, because it was an "incomplete response", 3 doctors recommended surgery and 1 was ambivalent. I elected to proceed.

I'll start outpatient PT soon too. My arm/neck/shoulder function isn't too bad, but I need to encourage my other muscles & nerves to compensate properly. Also, I want to avoid getting a "frozen shoulder"... not that I really understand what that is. But this weekend I'll mostly just take it easy.