Hello:)

Next friday I am scheduled for a maxillectomy at the UW in seattle.
Upon examination the dr there did not see any more tissue effected in the gum region where my oral surgeon had biopsied and found it, but the ct with contrast concerns him that it has invaded into jawbone.

I am scared of a few things I do not know. Anyone who has been thru this, I would sure appreciate your input / feedback.

My concerns are:
1) will i be able to swallow etc. when I wake up?
2) will i be able to take my meds?
3) can you lay down when you get home or do i need to get something for propping me up in bed?
4) how long is the bad part of recovery?

can someone describe their experience so i have a clue of what i am facing? i know everyone does different, but a general idea helps a lot when you feel lost and scared.

Thanks so much in advance.


I have a 3 y/o and though my sister is coming to help, I hope I am doing well enough soon after that my little girl doesn't feel disoriented with it all.

I don't know if my husband's experience will help, but I'll try. He had his right lower jawbone removed and replace with his leg bone and surrounding tissue. He also had the bottom of his mouth (under his tongue) replaced. You need to ask your doctor how invasive this might be. My husband also had a neck dissection since his cancer had spread to lymph nodes. He had a trach tube and an NG tube inserted during the operation. They were both removed prior to his coming home. He had a PEG tube surgically inserted to help with nutrition. I think alot depends on if you will have chemo and/or radiation afterwards. Please post what type of cancer and what stage so people can identify with you.

Sue

Thank you Sue Marie
This is all new to me, so I was not even thinking what I should post - sorry

Here is what they have told me:

They will remove an end block of the upper jaw - hoping for clear margins. This will open sinus cavity so they will use a prosthesis to cover this at time of surgery - screwing it into place for holding at time of surgery then a week later removing screws and refitting it.

At that time lab reports should be back on the block of jawbone they have removed and will show if they got clear margins. If they did then I will not receive radiation - if they did not, then I will have 6 weeks of daily radiation, about 6 weeks after surgery.

My mind is not computing this at all right now - was doing ok until it got to a week away and now my mind is on overload and all i can do is cry.

I am so scared and have no clue what I am up against or can expect and when I called down to ask the nurse my questions I never got any answers.

I don't feel as though they have told me anything as far as what to expect once they do the course of treatment they have chosen, they have not explained anything at all, which makes it more scary.

All these questions run through my head ...

Will I be in bed for days / weeks? Will I be able to speak in a few days? When can you drink? Does it cause choking? Can you lie down in bed or have to be raised up to not choke? Can I swallow my daily meds with water? How bad is recovery and how long is the worst part and when do you begin to feel human again?


- Diagnosed with squamous cell carcinoma where upper wisdom tooth was removed. Have not been told a 'stage' as of yet just that it was caught prior to it hitting the nodes.

Thanks so much for any insight you can offer.

Hi,
Here is a link to a article that discusses the procedure.

It states:
The first prosthesis is a surgical obturator prosthesis and it is placed in the mouth at the time of surgery. It immediately restores the contour of the mouth and allows for speech and swallowing after surgery. In most cases the patient is able to start a liquid diet immediately and then progresses to a soft diet within two or three days.

http://www.mdanderson.org/Departmen...p;pn=DC30F0BF-7545-11D4-AEC300508BDCCE3A

Any surgery is serious and scary, but post-op I am sure you will get pain management meds, be sent home right away, and should do just fine.

Look for posts by August, who has been through a similar procedure and has been exceedingly helpful to people in your position.

Go to User List (at the top of each forum page), then search for users starting with the letter "a" -- you'll find her on the last page of the A's. Once you have her profile open, you can look at her posts, or send her a private message or an e-mail.

All the best,
Leslie

Dear AZ....I wish I knew your name! This is "August," and my real name is Colleen. I am going out soon to a movie with my husband...and I will have popcorn and drink a coke and I could have corn on the cob or bbq'd ribs if I wanted to...had crab legs last night.....I have had the exact surgery that you have had, and there are not many of us on this forum, but there are a few. I hope you'll do what Leslie has suggested and search for and read my past posts.

I am committed to helping people who have maxillectomies, because I recall VERY clearly how frightened I was and how even my doctor's staff didn't prepare me very well. I want to help other people to get through this surgery with a little less fear and anxiety.

I'll write more later, but I think that after you read some of my posts, you'll have more specific questions to ask.

I'll share what my surgeon told me: ..that if one must have oral cancer, this location is the best place for it, since it is the easiest place to get clear margins and to feel that you are rid of it, and it has lower chances of recurrence. I choose to believe him!!

For comparison, I had my maxilla removed (on the right, just for your info) the length of five teeth. (It would have been six if I had had my wisdom tooth still.) I have read that since it generally does invade the bone, at least microscopically, they seldom remove just gum tissue but will take the bone also. I have remaining all four of my incisors, and the remaining teeth all around the other side. I was sososo sad about losing "so much," until I have watched as others have lost so much more. It sounds like you will lose even less than I did, and though I wish you hadn't had this bad luck, I will promise you that you are in very good shape indeed.

Your child will never know that anything is wrong, after you recover. With that little loss, your speech and ability to eat will be unchanged.

I had a neck dissection (because my lesion was overlooked by my dentist...another story...and had been in my mouth for so long..) I doubt that you have indications for that.

My surgeon said that he believed in getting a cure the first time, and for that reason, he always takes wide margins. I was soso sad at the time, but now I appreciate it! Since my margins were clear, and my neck dissection was negative, he did not feel that I needed radiation of chemo.

There are reconstructive surgeries that are very successful down the line, after one is sure that they will remain cancer-free, so just tuck that knowledge away for now, and be comforted by it.

You may find that you do just fine with the obturator appliance.

Have you seen a prosthodontist yet? You should be sent to one before your surgery, for some impressions to be made to be used later, and for him/her to make the "surgical obturator." This "appliance" is pretty simple. It is mostly a flat plate, designed to hold the packing in the opening that has been created in the palate, allowing the mouth to communicate with the space above it.

You will stay a night in ICU just as a precaution, to guard against swelling, but you won't have any problems. You'll be able to talk just fine, and you should be able to swallow too, depending on the fit of the obturator. Mine didn't fit well, and I had troubles.

I must go now...more later.....and I will be glad to answer emails too...but first read what I've already written here. I might even forward some emails that I have written to others, just to speed up our communications.

You will be fine. You will be sooo surprised. I sing, I am chairman of a Board of Directors, and I was back to being in charge about a month after my surgery.

More later.....gotta run. The Dark Knight awaits....and buttered popcorn. YUM!!

XOXO--Colleen

Colleen, GRRRRRRR, I want popcorn. LOL Even regular corn would be a delicious treat. I jjust read the answer you posted and you sure covered all of the bases.

Jim...I didn't mean to make people feel bad whose eating abilities haven't returned yet. I just wanted to assure AZ that he/she will do well, since,if I am analyzing his/her comments correctly, my own surgery was slightly more extensive than his/hers will be, and I am doing quite well. Do I wish I could snap my fingers and make this terrible experience go away? You betcha! But I have been blessed, also, and I want to alleviate AZ's fears somewhat, by assuring him/her that life won't be changed too much.

I was smiling with you not against you. I love to hear this type of story. You are the people that gives us soemthing to look forward to in the future.

Jim, I had no doubt that you were smiling in your comments, and I was just trying to encourage AZ that, since his/her surgery will be less than mine was, he/she should be in even better shape. When I re-read my comment, I realized that it sounded like I was showing off, and I certainly would never do that!! Things aren't perfect, but I can't complain when I am doing as well as I am.

Keep smiling!

XOX--Colleen