HI

MY NAME IS RAYMOND AND I AM 35 I HAVE JUST BEEN TOLD THAT I HAVE SQUAMOUS CELL CARCINOMA CANER IN THE MOUTH.
AND THAT THE TUMOR WILL HAVE TO BE REMOVED FEB 22ND AND THAT THEY WILL BE TAKING ALOT OF MY TOP PALLET OUT OND BONE TO GET RID OF IT AND WILL HAVE TO WEAR SOME TYPE OF PIES IN MY MOUTH TO KEEP FLUIDS AND FOOD FROM COMING OUT MY NOSE AND THAT I WILL NOT BE ABLE TO TALK PROPERLY OR EAT FOR A GOOD WILE.
CAN SOME ONE TELL ME WHAT TO LOOK FORWARD TO PLEASE AND DONT HOLD NOTHING BACK I WOULD RATHER KNOW NOW THAN LATER.
THANKS RAYMOND

Hi Raymond,

I was 32 when they told me I had SCC in my tongue. Lost 1/3 of my tongue and had a modified neck disection where they took out lymph nodes, salivary glands, etc. You have definately found your way to the right place to ask questions of folks who have been through what you are facing.

Several items you need to ask your doctor about:
1) Feeding tube/GTube post surgery -- you will most likely need this based on your first posting.
2) Is surgery the only option? Is your doctor planning Chemo/Radiation treatments, etc?

I found that it was easier to write my questions down and keep a journal so I could ask the Dr each time I saw him. One time I faxed him 4 pages of questions before I was going to see him so he would have time to digest them.

You are in for a long and difficult treatment, but I am living evidence as well as many others on this site that it is survivable. You will have to make an adjustment to how you are used to living once the treatment is through. You will most likely have visits with speech therapists and swallowing therapists to retrain your changed anatomy.

This site is full of knowledge and I highly recommend you use the search function as it will lead you to more specific questions about what you are facing.

Feel free to ask me specific questions about what I went through.

Good luck and fight hard.
Jim

Raymond,

Welcome although I don't have experience with you exact cancer, mine was in the base of tonge. I'm sure someone will come along here shortly who can help with your specific treatment. Have your Drs mentioned radiation or chemo to you if so do you have any specific questions? Have you had a 2nd opinion from a CCC that handles head and neck cancer specifically? If not you can check this link:
http://www.oralcancerfoundation.org/resources/cancer_centers.htm

Raymond --

Do a search (link is at the top of each page, in the center) for postings by August, whose surgery a year ago sounds similar to what you are anticipating. Once you find her postings, you can click on the small icons next to the date to e-mail her or send her a private message.

And I second the recommendation to get a second opinion at an NCI-designated cancer center with head and neck cancer specialists on staff.

All the best,
Leslie

Hi, Raymond. This is August, and Leslie is right in saying that I have had your same surgery, one year ago on Jan. 4, 2006.

There are not many on this board who have had this type of surgery, but there are a few. I will let them answer for themselves.

I will presume, from your description, that your surgery will consist of a maxillectomy, probably on one side, and a partial palatectomy on that same side. That means that they will remove the part of the upper jaw bone that has the cancerous lesion on it, as well as the hard palate adjacent to that area, since I presume that the lesion has spread to the palate, as mine had.

When the jaw bone is removed, whether or not part of the palate is removed, it leaves a hole. The area where the cheek was attatched to the jaw bone/gums is closed with a skin graft or a graft of artificial material. When part of the palate is taken also, then the hole is simply a little larger.

This is very important: ARE YOU BEING SEEN AT A CENTER WHERE THERE IS A TEAM WHO WILL PLAN YOUR TREATMENT? IS THERE A PROSTHODONTIST INVOLVED? This is really important. The prosthodontist is the dental professional who will make the appliance that you will wear after surgery. That appliance is called an "obturator." It will be fitted to your mouth before surgery, and it will be installed in your mouth during the surgery, so that you will wake up with it. It should be fitted before your surgery, with impressions made that he can use later for more advanced replacements for this surgical obturator. The prosthodontist should be part of the planning team from the beginning.

This is, like most things you learn about on this site, a very disturbing surgery, but one that is doable. I had trouble accepting this loss, but now I can do everything I ever did.

My surgery took about 5 1/2 hours, and I stayed in the hospital only 2 days...not long enough. My whole family are physicians, so maybe they felt that I would be cared for....and I was, royally!....but still I wasn't ready to go home at that point. I wasn't eating at all, and I wasn't swallowing at all. At one point at home, I begged for a feeding tube, just to get some hydration. My husband said that we needed to try one more day, and that day I was able to get a little down. You shouldn't need a feeding tube for this surgery. However, if you have radiation soon afterward, you will have to discuss that with your doctor...with your TEAM. ....but you shouldn't need it just for this surgery.

After the surgery, my original obturator did not fit well, so I was not able to eat and was afraid to drink.....afraid to swallow anything, because I wasn't sure where things would go. I later learned that 1. the opening is covered totally, just like before the surgery, and 2. there is no place for things to go that it won't come back out safely.

I had some trouble opening my mouth because it had been traumatized by the long surgery. It is important as soon as possible to consciously make yourself open your jaws. It takes some time and some concentration, but it is important.

I did have to eat liquid Boost for a while...lived on it.....but I honestly think that if I had had a better surgical obturator, I could have eaten sooner. My chewing teeth didn't meet because of the obturator, and I didn't know the cause.

I was out and going on short errands within the first week, and I even went to church the week after my surgery. I was probably pretty beat-up looking....swollen and bruised.....but it was uplifting to me to be out. I took walks in the neighborhood that first week. I also took lots of naps and cried lots of tears.

You will return after a week or 10 days after surgery to have the surgical obturator removed, so that they can remove the packing from your sinus cavitity. This is an unsettling day. Nobody told me what to expect, and that made it worse for me. One of my OCF friends had the same experience......not knowing what to expect. What are they thinking when they do that to the patient??? This will be your first introduction to the reality of having the opening in the roof of your mouth. You will still have a little bleeding from the surgical edges, and you will not be able to control your saliva because you won't have yet learned how to swallow with your new anatomy. You won't be able to speak to say how frightened you are. Take a pencil and paper so that you are not "speechless." I was worried about choking. They assured me that I wouldn't choke, even on the gauze they jammed up into my wound. I was terrified, and I am still angry about that day.

You will then ....that day.....see your prosthodontist. Be SURE that you have him all lined up....your doctor should do that. He should have an appliance ready to go into your mouth. It will require adjustments, of course, since there is no way to predict exact measurements before surgery. He will likely put some goop on it and place it into your mouth, into the opening. This seems bizarre....and it is....but it isn't truly painful,..not like you'd expect. He will be making a cover for your palate that looks like a teenager's retainer after braces, except that this one will have a "bulb" that goes into the opening to seal out air and food and liquid. It does a pretty good job. This obturator is called the "interim obturator," because it will not be your permanent one. Your tissues will continue to change, and as you return to him every week or two, he will "reline" the obturator by putting new goo on it so that it will take the shape of your mouth. It will be attatched to your remaining teeth with wires, and you will soon need to learn to take it out and put it in, for hygeine purposes.

The first time I took mine out....at about 10 days post-surgery.....I panicked and couldn't get it back in. I called my friend and neighbor, the oral surgeon who made my diagnosis but who did not do my surgery, and my sister took me to his office for him to replace it for me and to teach me to approach from the side where the teeth are missing. That worked.

My surgeon and my prosthodontist say that I should sleep without it, for a variety of reasons, but it took a while for me to be able to do that. I didn't like the idea that I was not able to call for assistance if I needed it. I used a baby monitor and had a bell close by, along with the telephone. I never needed any of them.

I did not have radiation or chemo. My margins were, fortunately, clear, and my neck nodes were negative. My one-year scans were negative, and so far, I am a very lucky girl.

This has been a difficult time for me, of course, but actually, I very soon returned to my activities. I decided that I was not going to hide. I told everyone I knew all about what I had experienced, so that they wouldn't be too curious or embarrassed to show concern. That has been the right thing for me. I still have people ask about my health everywhere I go, and I appreciate it. I have people continuing to pray for me, and I welcome that. When I say something that they don't understand, I laugh and say it again, blaming my appliance. Actually, few people would ever guess that I had had anything done.

I had my surgery on Jan. 4, and on Feb. 14, I was hostess for a concert that I couldn't sing in but wanted to be part of. Soon after that, I chaired a big meeting and hosted a book club discussion. I sang in a concert in late March, singing alto instead of my usual soprano, because of some vocal cord insult during my neck dissection. That was a true victory for me...singing in that concert. Many people realized how devastated I had been to think that my singing days were over, and they rejoiced with me that I was able to participate again. My voice has continued to improve...not quite to the pre-surgical ability, but good enough for me to be part of my chorale and my church choir.

I have, just today, received my "permanent" obturator. It is much more streamlined than the intermediate one, and my speech and singing are going to be even better than before. This one is made of a combination of metal and acrylic. I can send you a picture in an email if you wish. Your first one will not look quite like this. I have some other articles saved in my computer that I can send you if you wish.

I'm apologize to the rest of you for this very long post, but I know how lonely I was before I found a few other people with this same surgery. I hope I have been helpful to you, Raymond.

I hope that the other maxillectomy patients will also write to you.

Tell me how much of your maxilla they will take, and how many teeth. I had five teeth on the right side taken, along with the bone from the rear of the jaw joint up to the lateral incisor on that side, which I was able to keep. So I have my four front teeth still, along with all of the teeth around the "good" side.

I'll stop now. I hope this has been helpful, just to know that someone else is out here. You can ask me ANYthing. I am doing really well, and you will too. It is upsetting and unsettling, but I have been told that if one has to have oral cancer, the upper jaw is easier to accommodate to than other areas, and easier to eliminate.

Feel free to email me or just to post again here.

You can do this. It isn't fun, and it is upsetting, but read the posts on this board, and you will realize that many people have worse scenarios, and my heart goes out to them.

(Sorry for the multiple postings....I don't know what I did....pushed the wrong button, I guess)..

Two things....at the end of my post, I meant to say that the upper jaw is easier to work with as far as surgery goes, and that the cancer on the upper part of the mouth is easier to eliminate than the cancer in other areas. At least that's what I was told, and I choose to believe it!

I re-read your post, and you don't mention that you will have part of your jaw removed. Is your lesion limited to the hard palate? Having natural teeth all around would be a great help in securing your obturator.

Let me know more about your situation, and maybe I can add a bit more detail.

I see that you are from Knoxville, TN. I, myself, am a native of Memphis.

Raymond, I was glad to receive your personal email. I am pleased that you reached out to me. I want to be as helpful as I can be in getting you through this difficult time.

I want to urge you to also continue to post on the forum, since there is so much caring support here, even if someone doesn't have the exact same problem. Also, since I didn't have to have rad. or chemo., you might need to hear from some others here who have that experience.

You mentioned in your email that you will have a PET/CT today. How about posting your results so that we'll know what you are facing.

Continue to email me for specifics if you like. I wish I had had someone who knew something about what I was facing, and I would be honored to be that person for you.

Do you have family around you? I sure do hope so. Children? If so, I know that you are concerned about them. Children are quite resilient, and they will learn compassion and will step to the plate in surprising ways. You all will grow from this experience.

There are blessings in all of this strife. You might not realize that until a bit farther down the road, but they are there. Would I have wanted to have cancer to realize those blessings? No, of course not, but I am humbled and uplifted by the blessings of friendship and prayer and concern shown to me by others. I hope that you can feel that support coming your way too.

I look forward to hearing about your scan report.

Raymond.....How did it go today? Wasn't this the day you were to find out about your scan results? I hope that you got the information you need to move forward and begin the long road back to good health. Keep us posted, and never forget that you are NOT alone in this journey!

Hi Raymond,

Hope everything went well in your meeting with the doctor. Feel free to give me a call of email me if you would like to talk. Until then, stay positive and remember that you are not alone.

Gary

Raymond,
My husband had the same type of surgery in 1975 he had a reoccurance in 2001. He wears an obturator as well. He is doing well. It was quite a challenge learning to eat and speak again. I agree with what Colleen said in her post. Check with a dentist or prosthodontist regarding your remaining teeth. Ron, due to radiation kept developing infections and we finally had to have hyperbaric treatments and then have the teeth surgically removed.

Good luck and keep us informed. We are all here for you!

Cacky