hi, i am a 39 year old wife and mother of two terrific little boys. i want to start by stating that i do not have cancer, but will be undergoing a total maxillectomy in july. i found my way to this site after weeks of up all night searches for just anyone to talk to about what is about to happen. the only way i could even find any info on my upcoming surgery was thru oral cancer sites, as there is very little infomation on my tumor. after not going to the dentist for a couple of years and ignoring a lesion (which seemed to me nothing but an irritation on the roof of my mouth from my daily regimin of captain crunch cerial) i had developed gum disease and subsequently two loose teeth. my fear of the dentist probably would have kept me away longer, but the loose teeth thing freaked me a little. so finally, i went to a periodontist and within 2 days i was forwarded to an oral surgeon and biopsied. a long agonizing week later the surgeon came back with "pleasantly surprised it is not a malignancy, as i expected - but concerned about what it is." i was dianosed with an ameloblastoma, a rare, usually benign bone tumor of the jaw. in my case the maxilla, which is even more unusual as if it weren't rare enough. he did not offer much info, except that it was disfiguring and that it would have to be taken care of. i was sooo grateful and incrediably thankful it was not malignant and rushed home to tell my half-crazed family and friends. then of course, got on the internet. the more i found and found out, the scarier it got. by the time i met with my new maxofacial surgeon i already knew the grim facts, just didn't know til after tests how much jaw would be lost. turns out it will be 3/4 of the maxilla and the bottom of the sinus cavity, much more than we thought and we were stunned. i remain still stunned weeks later. i am fuctioning but still just can't get my head around it. i met with the prostetic doctor this past week and got the molds done and heard all about my upcoming months and issues. left even more scared and concerned about speech, swallowing, eating and the like. she, like the surgeon, totally downplayed reconstruction options with mentions of reoccurance. first i heard about how it would be many many surgeries and again back to prostetic issues and painful recoveries. also added was not closing the sinus due to the flexibility of the graph would forever compromise the prostetic. since then things seem even more bleak to think that even reconstruction is not such a great option and was told that most do not opt for it. i still cannot get over a couple of loose teeth can lead to this and feel like i am walking in some parallel universe. i am terrified about the surgery itself and what to expect, waking up, the pain, eating, cleaning the wound and the long term effects. it just seems so enormous to me and even makes the way past 6 years of infertility treatment look like a picnic (afterward we were blessed thru adoption.) i guess i thought the trying times were behind me. my friends and family are being forever supportful, but of course, don't know what to say. i was hoping that even though what i am going thru is nothing compared to so many here, that i could connect with someone who had this same surgery. would like to know whatever you are willing to share big or how small. i feel if i can get some feedback on the true reality of it, perhaps i can accept it more and maybe even breath...thank you.

Dear Nervous,

Of course you are terrified! I want you to take a deep breath and then I want you to know that you are going to be ok. I am one of the few....but not the only one....on this wonderful site who have had a maxillectomy and palatectomy. Mine is not as extensive as yours might be, but I have an acquaintance who has had removed almost as much as they are discussing for you.

Do NOT feel that reconstruction is not an option for you. At 39 you have plenty of time for a conservative waiting period to check for recurrence. My acquaintance here in Louisiana has had reconstruction for her non-malignant tumor.

I am sorry that you have to go through this, but I think I can help you with some questions. Feel free to write me here, or to email me at [email protected] . I don't get to the forum every single day, but I do check email several times a day.

I have lots to say, but first I want you to know that there are others on this site who will also have advice, so I want you to stay connected here, as well as emailing me.

You are fortunate to live near some wonderful medical advice in Philly, as well as some of our most generous forum members.

I hope to hear from you. I do wear a prosthetic, having lost about a third of my maxilla--on the right--and about a third of my palate on the right side.

You do have a challenge ahead, but at least you do not have the added worry of malignant cells metastacizing to other organs. That's something to be thankful for! You are going to be ok, and there are many talented oral professionals who can help you regain function through good surgery and good prosthetics. Have hope! You can do this. Please write!

XO--Colleen

I have a friend with the same type of tumor you have. Upon meeting her I didn't even realize she had had such extensive surgery. She looked wonderful. I won't downplay the experince she had but you'll come through it especially if you try to stay positive. My husband had reconstruction following a partial mandibulectomy and looks great also. He had the bone from his leg grafted to his lower jawbone. The plastic surgeons can do amazing things today. Stay strong and keep coming to this board-the people here are truly inspiring!
Sue

thanks for writing me, i so appreciate it!!!! it is so nice and comforting to hear that i am not alone! i will be going to university of pa hospital and lucky that its only 20 minutes away and from what i hear awesome for this! currently waiting on my second opinion and have been glued to my cell like a lunatic (darn holiday!) i have so many concerns and questions and hope you don't feel bombarded! haven't been in a forum for a long time (since my infertility days) and know sometimes things don't necessarily want to be relived. so truly, if i overstep, let me know : ) firstly of course, the surgery. i read on some sites horror stories which certainly didn't help me out and was wondering how you felt upon awakening, could you swallow, breathe, talk? i know the first prostetic (1 week one) will be in there but wonder about swelling. when i had my little biopsy i had unbeleivable pain for the first 2 days. i swear most of it was total nasal pain and general gum pain from my gum disease. the wound pain was not so pleasant but not nearly as bad as the rest of it. my husband ended up calling the surgeon at 9 p.m. as he was ready to bring me to the e.r. i am hoping it was a fluke, but of course worried. obviously the biopsy was on the pallette, yeah, close to the sinus' but not nearly as close as we are about to get! i assume i will get lots of drugs i am hoping i can knock myself out for a little bit : ) docs also told me i would be eating relatively quickly and finding that kinda hard to imagine too. were you able to, and getting even more personal, did it feel different, or taste different? lol, just lost like 23 lbs. since new years' - officially off my diet now! doc also said only a couple of days in the hospital, not surprised by this since they rush everyone out these days. was your stay similar and how was homecoming. my mother wants to spend 2 weeks to help with the family and all and well, although she is a great mom, she makes me pretty stressed in general. my husband can take a week and my boys (4 and 7) will be at camp which i will be extending hours for that month (8-6) so i guess i don't think her help is that needed. am i wrong??? doc stated one month recovery, the first two weeks the worst of it. from that point all everything is about life adjustments. read articles about cleaning the area and already freaked and grossed out. i am sure it will become a way of life, cause lets face it, it has to. the only grateful thing with the prostetic doc was that appliance #2 would be 24/7 for up to 6 weeks. it won't have teeth (not the best surprise) but i won't have to deal with the wound yet (outweighs the teeth!) you would think with 2 boys (dirty, so gross little guys) diapers, virus' etc. this would not be an overwhelming factor, but somehow it still is. i keep imagining the first time i look in there and my heart sinks. i keep reminding myself about anyone losing a limb, sure it felt the same way at first, then they put on their appliance and went to work! did you need a lot of adjustments at first before healing was complete? how hard was it to adjust to then and how is it today? are you cancer free or still in the midst? i know i am so lucky that it was not malignant. i have been a smoker since i was 15 and now i will be quitting, another thing to add to the list of things that suck : ) i have read thru a lot of posts and oh my gosh, i just cannot imagine. there are so many brave people out there and hope that i can take their example...
thanks again for getting in touch, looking forward to hearing from you (happy holiday!) marieka

Marieka, I will email more answers, as I know that most here are not interested in the nitty-gritty of maxillectomies, but as for the issue of reconstruction, I don't think you have to give up on the idea. Yes, at first it would only make sense to make the best of the obturator.....and probably for several years..to be certain that they have removed all of your tumor. Even if it isn't "malignant," it might recur, due to some small molecule left behind. They can surely be more vigilant if they can look directly. My surgeon said the same thing, but at one year, he was talking about reconstruction, saying that actually, the PET scans today are so sensitive that a PET/CT would detect a recurrence before he could see it. I haven't had reconstruction, but I am seriously considering it.

It will, like Sue described, involve the use of the fibula from the lower leg, along with tissue, skin, and a blood vessel. These are installed into the mouth, with the bone forming a new maxilla, and the skin and muscle forming the roof of the mouth. The blood vessel is threaded into the neck to connect with circulation there. You don't need to know more about that now, but don't feel that you will never be able to have that done. I can't see why, at 39, anyone would tell you that you couldn't eventually have that.

In the meantime, I have spoken with a specialist in prosthodontics at Baylor Dental School in Dallas about ways to secure an obturator in the absence of the maxilla and palate, though I have not lost that much structure and am able to secure mine with my remaining teeth. He told me (and showed me an article showing photos of someone JUST LIKE YOU who had had this done, and you can too, very soon after your surgery) that since this patient had no teeth to retain the obturator, he installed implants into the remaining bone in her sinus cavity, either the pterygoid bone or the zygoma. These implants served as clips to hold the obturator in place, and she looked great! This is something that should be able to be done as soon as you are healed.

You said something about not being able to have a soft repair....From what I've read, he's right about this. If you close the palatal opening with only skin, you will not have a way to secure the obturator, so you can't have a dental appliance.

I tell you these things, even though it is premature to discuss them, so that you'll know that there are solutions out there. Things are not as bleak as you feel now that they are. The field of prosthetics performs miracles every day in giving people back structures that they have lost.

You are correct about so many here having dealt with so very much. It is humbling. That does NOT, however, diminish your sense of loss over your own situation. I think that we all feel grief and a sense of loss over these structures we give up, and the functions we have to adapt, but I promise you that you will find blessings in this experience along the way. I won't say that it's an even trade, of course, but there will be blessings that will help you through it.

It sucks, for sure, but since you don't have malignant disease, I don't suppose that you will have radiation or chemo? Do you know if that is a possibility with your kind of tumor?

It's interesting, isn't it, how they can say that your tumor is not "malignant," when there is nothing "benign" about it!! It's bad, and it has to get out of there!! But at least you don't have to worry about it going into other vital areas. That's something to be thankful for!!

You will make some good friends here, and those who have come to care about me and my situation are now among the blessings I count. You will learn lots about yourself, and your husband, and you will find that your friends, if you let them, will do anything for you, and will be more caring than you ever could imagine......IF you let them. IF you invite them to share in your experience.

I had NO time to prepare or to worry. I knew absolutely nothing before my surgery, so I think that there must be some desirable compromise between having time to prepare and having too much time. Gather all the information you can, and at some point, after you've done all you can to choose your medical personnel carefully, the time will come for the Journey to begin, and at that time, it will be almost a relief to finally get started, .....a beginning that will be the first step in getting it over with and getting back to normal....even if that is what we on the forum call a "new normal."

You will have accommodations to make, but you will do much, much better than you think.

You don't have a choice about it, of course, so at least you don't have to struggle with that decision.

I'll email you my telephone number, and you are welcome to call if you wish.

I wish I could make this go away for you, but I can't, but I know that I can help you through it, and give you some information that I hope will calm some of your very natural fears.

I mentioned an acquaintance who had much of her maxilla and palate removed. She has had reconstruction, and you would never ever know she had had surgery....not in her appearance or her speech. It will not happen overnight, but the reality is that there will be a solution down the road for you, so never give up that hope.

I'll email tomorrow. Ask anything you wish. I'm not shy. If I can help you, it would be a blessing to me.

XO--Colleen

THANK YOU!!!! COLLEEN AND SUE, your emails have REALLY made me feel better. i cannot stress enough the comfort in knowing there are people to talk to who truly understand! i mentioned to my mom last night finally finding this site and she was just so happy for me (and prob. relieved as she has run outta things to say at this point : ) The reconstruction options brought up are such a relief. when you go on-line its just a mass of terms, flaps and such, most of which i cannot understand (at least yet) and i don't need to yet, but it helps to know the future options. i know now that the down-playing regarding reconstruction (when i was asking the docs) was really because of the recurrence, temporary, but not forever. not sure why i didn't piece that together earlier, probably the cloud i have been in. knowing that the options are there definitely helps when i think about the long term! yes, ameloblastoma does have a recurrence rate. the doctor did not get into it yet (next visit) but from what i can gather around 24% after the surgery. i am not sure how long is considered a safe-zone to consider reconstruction (next visit) some sited 5 years, others 8 (like i said, a mass of info, could and hopefully be much less?) no chemo or radiation, we had asked about it as well, in hopes to perhaps shrink it, so much would not be lost. surgeon said that it is "basil" cell oriented and that it would not be very sucessful or responsive. many articles compare ameloblastoma to skin cancer (obviously without the cancer!) the cells they believe could have been there since infancy as they should have created tooth enamel and for whatever reason (big medical mystery to date) they didn't and lay dormant til recently. other studies suggest trauma can cause them which is even more interesting because as an infant i was actually electricuted in germany (where i was born). after of which, i had several reconstructions as a child and they did an awesome job. if that wasn't trauma to the mouth? anyhow, sat there at the time wishing the radiation, but after learning more from this site and others - grateful to say the least not necessary. also wanted to clear up this "total" maxillectomy diagnosis. apparantly, total does not mean total (but according to surgeon, over the midline they call "total") in reality, i am losing approx. 3/4 of the maxilla (a 9 tooth span and above) from the right "eye-tooth" (i think, the one to the right of the front big tooth) thru to the end of the left top line. i apologize i should have been clearer and sorry to COLLEEN who went the extra mile (you are AWESOME!) so yes, as far as the prostetic i will still have natural teeth to support it thank goodness! AGAIN, sorry about the terminology! THANKS AGAIN and look forward to learning more. the more i learn, the more i feel in control of what is about to happen and although still pretty depressing, it really helps. please too, i would really like to hear about your issues as well.... marieka

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

By the way, my "hemi-maxillectomy" begins after my eye tooth on the right side and extends to include the rest of the maxilla and teeth on that side. I have lost the bone containing "only" five teeth (would have been six if the wisdom tooth had still been there.) I have also lost about 2/3 of the palate on that side, though not quite to the midline.

You said that your intermediate obturator will not have teeth. I don't know exactly why not. They might not function well..or at all....but cosmetically it seems that you could have some. Add that to your list of questions. My first one didn't have teeth either, but it had a build-up of material that simulated teeth and filled the space that teeth would have filled. This was on the side, not the front. Even if the fake teeth are not perfect or expensive, maybe he can construct that appliance to include some. I sure would ask!

hi again : ) could that be a smile? your advise and past experience is awesome to hear! yes, the 2nd prostetic has no teeth. it begins right after they take out the 1 week one and will up to six weeks (asuuming its the inter one). the no teeth reason given (be sure i asked pronto!) was that it weighed the appliance down during the healing process, causing further issues of fit. in addition she added that there would be many adjustments during this period. my opinon is that the protocal with the teeth added on is probably a pain in their ass. after the up to 6 weeks i get the 3rd which will have the teeth and after the mouth is healed entirely the final one. final as in a new one every 6 or so years. do you find that the appliance has harmed any of your anchoring teeth? i read articles about this prob. at 3 a.m. but wasn't sure if it was due to all the pressure of supporting it, or if it really pertained to the teeth condition after chemo and radiation? my teeth presently are not in the best shape. like i said earlier, gum disease is what brought me there to begin with. i think i am pretty sure i should go get cleanings or whatever they do for that asap (though i so don't want to) as i would assume i want everything in best condition as possible? i did ask prost. doc this and she said it didn't matter. god knows how many cavities i have (as soon as the perio saw the lesion he was DONE with me!) he never even let me know what else showed up in all those x-rays! funny how i was dreading the whole gum scaling thing and nervous about losing those 2 original loose teeth (lol, could be so lucky!) mmmm, at least there is a whole lot he won't have to bother with! i had asked the prostetic doctor what do you like do with the dentist afterward and she said you take it our for work? that sounds, well, like nasty and somewhat crazy. have you had any fillings or anything done since? just wondering... sounds like your friend is doing well, is it done with one surgery, or several like mine had mentioned? i imagine, it must be like starting over but with a much better ending.. i am glad and relived to hear it is something that the future can hold. i cannot believe how quickly you had surgery! i would have gone crazy. at first it sounded like it would be rather quickly for me but i begged for july. literally begged (was crying at that point!) june we have the adoption picnic, by boy's birthdays, shore and a famiy cruise. i am going to add in whatever else i can for sure. i cannot imagine without proper consultation how confusing and overwhelming it must have been for you! even with all that, it is still so much. you must be very brave, not just for getting thru the process, but also for having such a great outlook now. so glad that you are out there : ) talk soon!

I just want to say, whatever you have and whatever they do, there are a klot of us that like to read post on here. I don't know what you will go thru , but you have my prayers. It can be frightening anytime they work on you. Good luck.