I was recently diagnosed for the 3rd time with squamous cell oral cancer. The last time was 7 years ago, had part of hard and soft palate removed and have been using an obturator for speech. Now, because it's a recurrance i'm told I need a total maxillectomy with a flap. Right now my jaw is so tight I cannot open my mouth enough to use my obturator so of course speech is hard to understand. I'd like info. on what to expect after surgery, what I can do and cannot do, etc. I haven't yet had a sit down with the surgeon to ask for specifics, that's supposed to occur this week or next.

Hi Jab

I am sorry, I can't help you as my Alex didn't have surgery and we have no experience of what you are going through.

However, I did want to say hello and wish you luck at your appointment. It sounds like you already know enough to ask all the right questions of the doctor. Maybe while the surgeons are there, they can ease the tightness of your jaw at the same time.

Karen

Welcome to OCF. Im so glad you have found OCF. You will find a couple members who have had this type of surgery. I will try to give you some help. Unfortunately your questions are very difficult to answer. Everyone is different and reacts to surgeries, treatments, and medications differently. Its also next to impossible to give an opinion as to what your abilities will be.

Ive had the mandibulectomy. It is the lower jaw removal surgery. What is similiar between our operations is that they are both very long, intricate surgeries. I had a few complications and ended up with a long hospital stay. Now Im a little more than a year post surgery and am doing great. My life is back to how it was before my surgery.

I have a few clarifying questions for you. Have you had radiation? Are you being treated at a cancer center? Have you gotten a second opinion? Please explain what treatments you have had before and where your prior cancers were located. A signature line would be very helpful. To add a signature, go under the "My Stuff" tab scroll to the bottom and type up to 300 characters in the box.

I wish you the very best of luck with this.

ChristinaB, thank you for your reply. Brian Hill and I have mutual friends and I spoke to him today and he suggested that I connect with you but you beat me to it. As you can see I have added a signature line (ty for the hint) I'm totally running in circles (my mind anyway) right now. My ENT wants to do the total maxillectomy even though he says it's localized this time, he wants to do the other because it's my 3rd occurance. I'm single so i'm worried about time off work, losing my job, money to pay all bills, monthly plus the medical (i do have insurance which will help) It sounds like u have really been through it, how have you been able to cope with it all?

well, finally 3 mos. after diagnosis and multiple scans, the tumor board has recommended removal to clear margins and to treat the trismus, and if all is clear for next year or so will plan on bone and skin graft to cover palate defect. They said that cancer that starts in the buccal area is a very aggressive form of cancer and that I would be fighting reoccurance for the rest of my life.

Hi Jab,

I have had this type of operation done as I has cancer of the hard palate which as you probably know is rare in the oral cancer arena. I will totally agree with Christine in that everyone's body reacts differently. So they plan on doing a total maxillectomy and doing a fibula flap to replace everything, is that correct? Are they planning on doing any chemo or radiation? I had one or two recurrences. The third one came right after laser surgery for the second one. Could have been there all along, not sure. In my experience removing the cancer surgically, although better on my body, did not take care of the cancer like radiation did. I think the radiation and chemo did more to kick the cancer than the surgery did. After radiation I had the flap done to reconstruct everything so they were building with fresh tissue.

It is a long road and not the easiest as it is hard to do certain things with a hole in the roof of your mouth and after surgery not having a roof on your mouth, if you already don't have one. I think I could go on for a while but would probably bore others. ;-)

I can understand all your questions about work, paying for everything, etc. Some of those will depend on exactly what they are doing to you and such. I MIGHT be able to help answer some of those with more info. Some I might not be able to help with. I to am single but my parents have been AWESOME through this whole journey that is not yet finished.

Feel free to email me or message me on here if you have other questions or anything. I have been through a lot dealing with this stuff.

I had a maxillectomy,and use an obturator. I was interested in your comment that after a year they could do a bone/skin graft to close the hole? I have never heard of this as an option. I oftened wondered why they couln't do this instead of the obturator. I wonder if this is new or only used in certain circumstances. The first ENT I saw just told me from the get go that grafting this area was not an option.

Also, since this type of cancer, of the maxillary, is so rare, I don't have a sense of reoccurrance rate. It sounds like what you have been told is this expected? Just interested in what others are being told. I know that we are have different circumstances that might effect this.

Sharon

Hi jab. Im glad that you came back to give an update. A source for help might be the American Cancer Society. They will help you by paying for medications (up to $300), driving you to radiation treatments or even paying for a prosthesis. It sounds like you will be able to get the graph since you havent had radiation. Or maybe Im missing that????

The things they told you about fighting a recurrence for the rest of your life, I wouldnt rely on that. Oral cancer is very agressive, a surgery that has clear margins should eliminate the cancer so you wouldnt have a recurrence. Ive veen where you are and I know how scary it can be. Please keep coming back and posting. You will gain so much knowledge and strength from OCF. Wishing you all the best!

Sharon,

Yes, there is something that can be done with the hole that goes into your sinus. There is also a way to "fill" the hole that used to be the roof of your mouth. My doctor was NOT expecting me to have a recurrence at all. The way they can fill the hole into your sinus is to take part of your tongue and create a flap that will fill that hole. Filling in the roof of your is major surgery and one that I was not going to do as I was ok with the obturator. I didn't have a need to feel whole as my doctor described it. I was whole.

The other thing is that with a total maxillectomy there isn't any bone left for teeth or anything for an obturator to attach itself to. So in order to eat anything other than soft, pureed foods you would need to get a fibula flap to get some bone back in there.

I am not sure of recurrence rate of maxillary cancer either but I would say that you might be in a better position than I was as you also had radiation after your surgery and I think it was the radiation that kicked it more than the surgery since it doesn't always show itself when you are getting surgery. My surgery was in the front of my mouth and the recurrence was in the roof of my mouth and in the back part of the side maxilla.

Thank you to all for the input, since I last posted I've had my surgery, during surgery they found an area of dysplasia on the upper side of my palate (inside the hole) that they are going to watch and I may wind up having more surgery in about six months, they stripped all the scar tissue off the jaw muscle and during surgery were able to get my mouth open to 3cm but of course while I'm awake it's tight again, I'm using the Therabite but my gosh I'm having a lot of pain, I know some is to be expected but I'm never less than 6/10 and usually 8-10/10. The original surgeons I had with the removal of palate also told me nothing could be done about hole as they didn't want to cover up area, however tumor board at Huntsman cancer center said a study showed it didn't make a difference in the rate of reoccurance or finding by covering the hole, it's a large flap that they use a graft from leg along with bone from lower leg if they do bone graft, so I guess it's what your doctors preference is. Again, thank you for the thoughts and info. I appreciate you being here