Dear Marieka,

I am elated to hear that "total" is not really total! That will make a huge difference in your being able to manage an obturator appliance until they clear you for reconstruction. You might find the appliance satisfactory and choose not to have the surgery, though at your age, and with advances being made every day, I'll bet that down the line you will opt for it.

Your amount of loss is EXACTLY the same as that of the person I know who has just completed her reconstruction. She had a tumor which was invasive but not malignant also.....I don't know the type. It's been a long road for her, because she went for a long time with just the obturator, and then attempted a reconstruction by a method no longer used, and it failed. She had the fibular graft procedure by my own surgeon, and now she looks great.

You are fortunate in ways that I was not: My surgeon's office scheduled me for surgery so quickly that I did not have a pre-surgical consultation with the prosthodontist, and that has plagued me ever since. You will be much better prepared with good molds for your appliances. The only molds I had were done by the residents the night before the surgery, and my surgical obturator was very make-shift. It was a shame, because it fit so poorly that I couldn't close my mouth, and my remaining teeth didn't even touch, so I couldn't eat, and it hurt like crazy...NOT from the surgery, but from the poor construction of the appliance. I didn't know it didn't have to be that way, and it was a long time before I could eat. I lost 20 lb. in the first two weeks, and 5 more later (I needed to lose them anyway, but that was a hard--and unnecessary way to do it!)

You will be much more comfortable, due to proper preparation and immediate professional involvement by your prosthodontist.

You will not remove that first obturator. You will have some surgical packing in your sinus cavity. This appliance is designed to secure that packing in place for a week or so. When you go back after about a week, they will remove that obturator, which is more like a plate than the next one will be, and remove miles of gauze packing material. Then they will place your "intermediate" obturator. I didn't remove mine for a few days, but I was instructed to do so. When I finally got the courage to do it, I got scared and couldn't get it back in, and my sister had to take me to the local oral surgeon (not my own surgeon, who was two hours away) and he showed me how to get it in.

Your instructions seem different, since you say you are to leave yours in undisturbed for 6 weeks or so. By then, you won't be quite as spooked as I was, though of course it will take some getting used to. You'll get the hang of it pretty quickly.

Interesting history and interesting ideas about how your tumor began..... You'll never know, of course, just like most of us, with our SCC tumors. I did smoke in college, but that was 37 years before my cancer appeared. That's a stretch, if you ask me. I drink alcohol only rarely, and I even got tested for HPV and was negative.

I am soso glad to know that we are helping you to feel better. It's still going to be a challenging time, but part of my difficulty was the lack of preparation and the breath-taking surprises that kept coming my way. I was wide-eyed and terrified, and though I have had excellent surgery, the presurgical preparation and post-surgical support have been disappointing. It makes a huge difference, and when I hear of people who are choosing doctors and feel that they don't get enough attention or that their doctor doesn't have patience with their questions, I encourage them to keep looking. That attention, that willingness to help the patient prepare for these major changes in their lives, is part of the treatment. If they themselves, or a primary member of their staff isn't willing to do this, then they are not giving their patients total care.

More later...

XO--Colleen