Yesterday my husband's doctors gave us the surgery date--Jan. 21. The chemo is not shrinking the cancer much, so they are worried about waiting any longer. Tumor Board met Thursday and resolved some conflict in thinking between the chemo doc and surgeon. Our best odds are surgery now, more chemo later (and possibly more radiation even though he had it last year for the primary T1 SCC--they are checking on dosages he had at another hospital, etc.)

The surgery will involve removing hard palate, right tonsil, and doing radical right neck dissection. The doctor explained where the incisions will be made, how his lower jaw will be split and swung open, etc. He said that they will try to spare nerves that control facial expression, but since his lower lip already suffers from some paralysis (a tumor in his lymph node under his ear/jawline is pressing on nerves, etc.), it is likely that that paralysis will remain the same or worse after surgery. He may also have tongue numbness on one side due to nerve damage as well. There is a possibility, he went on to say, that the nerve that controls the eye---blinking, closing, expression--will have to be severed. They will try to spare it, but depending on how deep the tumor in that area runs, they may not be able to.

Has anyone out there expienced this type of nerve damage from surgery? My husband is handling all this very well, thankfully, as am I (considering I've been a near basket-case for weeks now) but I really want to be prepared for what comes after. Is there any chance that even if nerves are severed, a graft is possible? (the doctor mentioned this).

Scott (my husband) will also have a skin flap with muscle tissue grafted to his soft palate, but he will have a prosthesis for his hard palate--a super denture, as it were, since they will also be removing a number of upper teeth.How does it feel to talk, eat, with this thing in? Any experience with this would be appreciated as well.

Christine

Hi Christine,

I am happy you have a plan to work with now. I can answer some of your questions. The split jaw thing might seem really scary but it is not as bad as it sounds. As to the nerve questions, some things with nerves recover some do not. In my case the nerve to the right side of my tongue was damaged so that side is not able to move properly (partially paralyzed) sense of taste is not affected. I have been able to speak so that not many folks would notice but moving food around in my mouth is sometimes a little challenging. It has been almost 3 years now with little change to that side of my tongue. I can easily live with it the way it is but I continue to hope for more improvement. Nerves heal VERY slowly if at all.

There are other here that have the prosthesis you describe, I have no personal experience with it but from what I have read they are not a big problem.

I hope everything goes very well!

Hi Christine. I had a tumor removed from where the wisdom tooth had been, and a modified radical neck dissection, all nearly two years ago. I have some numbness on the right side of my tongue. As Mark says, taste is unimpared, and it is just something one gets used to. As far as grafts, I had a nerve grafted in my shoulder. I had restricted arm motion (but no pain)on the side of the dissection for seven or eight months, then just like magic, one day the nerve kicked in and I had full range of motion restored. I have a degree of numbness, not total, of my ear and neck and jaw/chin area. This, of course, does not show, and now I don't even think about it, having gotten used to it. And I have become much more polite as because of nerve damage, I can no longer stick out my tongue (grin). Keep thinking positively, Christine. It is truly amazing what the body can do and how we can adapt to and overcome changes. Now we need to hear some super denture people chime in.

Thank you for sharing your experiences, Mark and Joanna. Your information is most helpful. I feel much relieved that we do finally have a plan. My emotions were so fragile Monday while we awaited news; I prayed for strength all day and it came to me by the time we met with the surgeon. It also helped that our surgeon was more positive than was indicated to us last week by the oncologist.

Apparently, they had thought the tumor showing on the outside jawline was "continuous" with the one in his right tonsil. That is why the surgeon said previously that we HAVE to find a chemo that will shrink the cancer because he otherwise didn't think he could get it all. I felt like things were headed toward hopeless after I heard that. However, another doctor examining Scott's CT at Tumor Board said the tumor is NOT continuous and two separate tumors will be easier to remove than one very large one (in addition to other things they have to do). Whew.

My husband also had a CT of abdomen and chest to make sure there was no spread; we were hugely relieved to hear "all clear." We were thankful to have positive things to hang onto (not that docs at UVA have been negative...realistic, although I think they hold back--to a degree, which sometimes scares me and sometimes makes me thankful. It's not that I have my head in the sand, but I guess I worry that I'm not ready to step away from the sandbox just yet.) We know how serious this is, but I can't help but be afraid of what lies ahead. I don't remember who to attribute a saying to that I read on a previous post here, but it went something like "There's no point in worrying about things that you cannot control." I've thought about that a lot and it has helped.

I do have another question to add to my previous ones: I've noticed in the last few days that my husband's face has puffed up more...it is more rounded and not just on the side already becoming misshapen from the cancer growth. We know some of his lymph nodes are tumorous (and there's the one large one), so is the swelling from lymph fluids "backing up" or from side-effects from chemo (like just fluid retention?) The overall puffiness of his face has gotten worse since we were at the medical center Monday. I've tried researching online but haven't found much. I hate to call his doctor with every little thing now that surgery is imminent.

Thanks for all your help and encouragement,

Christine

hi Christine,

it sounds like your husband's case is similar to mine.

i was treated at one of the major hospitals on the east coast.. they use a tumor board and to this day, my ENT, chemo & rad docs all have different views on my case.. but agreed on the treatment plan!

ENT- started in jaw, spread to throat.
Rad- started in thoat, spread to jaw.
Chemo - 2 separate.

ENT couldn't operate on it... so it was rad& chemo for me... it worked and all went away.
since nothing showing, ENT didn't operate at the end as expected. now 2 yr later, all is still fine.

so for me, it really doesn't matter what the docs think as long as they come up with a good treatment plan.. and that plan can change as the person progresses. it's results we are after.

best wishes for you and you husband,
cu,
larryb

Wow....thank you, larryb, for reminding me that every case is different and that I should not give up hope when things look bleak. I think if docs had told us surgery was not an option, I would have felt devastated. Your story is a great lesson to me! I am so glad that your treatment worked and that you did not have to have surgery. I have been so conflicted--just wanting that cancer OUT of him on the one hand, and not wanting him to have to endure such a massive surgery on the other. I pray that we and our doctors have chosen the right treatment also.

Christine