hi - my name is marieka and had a maxillectomy 3 weeks ago. user name is nervous and if you search "maxillectomy" on the site you will find like tons of posts with lots of info on my last couple of months. will be glad to help as i believe me can totally relate to your fears. it has been hard, but taking it day by day. the surgery itself was surprisingly not nearly as painful as i had imagined. make sure to request anti-nausia medications in your antestesia (not all will do this i am told). i woke up up able to breathe, even through my nose and able to swallow. i could even talk and be understood. the first prostetic that you wake up with will assure all of this. there will be lots of drugs to help you relax and rest. it was difficult at first to drink but you will have fluids and it won't take long to get to it. once home the meds (for me a steroid, pain killers & antibiotics) were all dispensed in liquid form. i only spent one night in the hospital and could not get out quick enough. found that being home was just as beneficial if not more. i did have help, so having your sister there to keep things in order is a good idea. you will need to rest. i basically spent the first 5 days or so couchbound and since slowly working my way back to the daily grind. in actuality, physically i am quite well, emotionally takes a little longer. it is a loss, one which will take time to get used to. i too have young children 4 & 7 and was totally upset for them. it was a little difficult for my older son, but my younger honestly didn't really get it. surprisingly (if yours is all internal, as was mine) except for some external swelling - you will not look much different. my entire family was shocked on how much they can do inside without actually changing the outside. the initial swelling resolved after the one week removal of the first prostetic. three weeks later, i look literally normal with just a tighter appearance of the top lip (which will in time end). i do not feel exactly normal yet, but know i will. my boys were not frightened of my appearance and adjusted within a day or two. drinking and eating were a challenge (eating still). august (colleen) - who has also responded to your post, was my awesome coach and made several suggestions which helped (definitely read her posts to me). have some baby spoons on hand at home and a mister bottle for water (lest you cannot take a straw at first) also, stock up on drinks (i liked the chocolate boost). with me they removed 3/4 of the maxilla (the bottom of my nasal canal and the volmer - a small bone which supports the nose). i was terrified, but can survive to say that each day will get a little better. it is a huge adjustment (still working thru it) but it does get easier. in time, i know that just like everything, i will get used to it (as will you!) i will be having a second surgery tomorrow. i definitely feel better about it than the first. unfortunately, he did not get the margin and they need to take a little more. this does NOT happen often but can, but as you know, they have to get it all. so anyway, sorry i won't be around for a bit to help you more, i hope i helped some. you will get TONS of support on these boards, lots of wonderful and caring people - stay on, it will help beforehand and afterwards. good luck, i promise, you will be ok... marieka (nervous on the boards)

Az:
Good luck on Friday.

Marieka:
Good luck tomorrow.

Thanks so much to all of you who have posted.

My name is Rita btw, so you have a name to go with a handle.

I did see the prosthodontist. He did the fittings for the prosthetics.

Your information is helpful and uplifting. I have been so scared of what is to come... and learning more from those who have been thru it helps so much... shows me i can do this - thank you!

i have one more question - dr is unsure if radiation will be needed. if it is he said it will be 6 weeks - daily - ... they say it is quite localized for this, so would it still most likely include mouth sores and the need of a peg tube?

i was on chemo yrs ago for arthritis and it gave me mouth sores - that was horrible! thinking of reliving that and to the point of needing a feeding tube is beyond my realm of handling right now but thought maybe the mouth sores only come if they have to radiate in a larger area? anyone know? all they have mentioned to me so far is that i could lose my salivary glands from it.

thanks again - i write in bits and pieces cuz i try to not focus on this too long at a time.

Marieka

my thoughts and prayers have been with you all day and will continue. that has to be hard, thinking you are all done and then having to go back for more. this could happen to any of us i am sure, but am so sorry you have had to deal with it.

when you get home and are able, please let us know
how you are doing. i will continue saying a prayer for you each time you cross my mind.

First..Rita (so glad to have a name!) and Marieka, I am warmed to see you girls helping each other through this. This forum is so wonderful in how it brings us all together and helps us to find those who can answer our questions.

Rita..I, fortunately, cannot answer your questions about radiation, since I was fortunate enough not to have had it recommended for me. I CAN tell you, however, what my surgeon said.

Remember that each case is different, and each doctor has different philosophies about treatment.

There is a U.S. Gov't. protocol that gives a general recommended standard of care. You can access it from the OCF site, but I can't right now tell you how to do it.

Can someone else give us some help here?

ANyway....back to my case. If I am understanding you correctly, my surgery involved a significantly larger area than yours. I have no idea how long your lesion has been present. Mine had been overlooked by my dentist, so it had been there at least 8 months before being diagnosed.

I have told you that my surgeon, who is a guru in this field, lecturing all over the world, said that this is one of the best areas for being able to get all of the tumor in the surgery, if wide enough margins are taken. At the time of surgery, he said that he was "going for a cure, because he didn't want to see it come back." and he said also that because of the length of time that the lesion had been in my mouth, he felt it would be prudent to do a neck dissection, even though nothing lit up on the PET/CT.

I lost the bone containing the back five teeth, and part of the hard palate adjacent, since the tumor had spread to the flat palate.

My margins were clear, and my neck dissection was totally negative, and the pathology showed "undifferentiated to moderately undifferentiated" tumor cells.

Based on this good report, he said that radiation wouldn't be necessary. (and you can see on the protocol that it is not generally recommended for cases like mine.) I begged for it, not knowing anything about it, except that I wanted to do everything I could to make this stuff gone. He said that radiation had problems of its own, as I know now, and that though he would be surprised if the cancer came back, if it did, we'd have saved a weapon to use at that time.

It's something of a Catch-22, it seems to me....whether to hit it with everything you've got and possibly suffer the consequences of radiation damage unnecessarily or to wait and possibly have a recurrence because not all of the microscopic cells were killed. Now that it seems that he might have been right (at 2 1/2 years, I am feeling a little more relaxed, though I don't want to relax too much.)

From what I have read here, and I will have to let others reply to the questions about radiation, it seems that the beam has been refined to the point where it affects a narrowly specific area.

My suggestion: I know that you are concerned about this possibility, but your surgeon won't know what he is going to recommend until after surgery, and after waiting about a week for pathology reports on the bone. (It takes longer to do the studies on bone, since it has to go through a process to de-calcify it, I think.)

Don't expend emotional energy worrying about something that you well might not need to worry about. If he does recommend radiation, you'll have time then to get all the information you need right here on this forum. I would recommend then that you start another thread, with a very clear question in the subject line, so your query won't get lost in this thread.

Ask anything that you wish. I didn't have time to ask a single question before my surgery.......the most amazing rush job in the history of OC surgery, I think. I discovered my tumor on Dec. 20, 2005. On Dec. 21, I saw my dentist, a prosthodontist, and an oral surgeon, who took an excisional biopsy. I got the results back on Dec. 27, and I had a PET/CT on Dec. 29. I had an appointment with my chosen surgeon on Jan. 3, and they had an opening for surgery the next day, and they suggested that I take it, so my surgery was on Wednesday, Jan. 4, 2006, two weeks from the time I first noticed the problem!!

There are plusses and minuses to not having time to prepare, but the bottom line is that I knew absolutely nothing, and I suffered for that lack of knowledge. I am determined to keep anybody else from suffering in that same way.

Sooooo ....ask away. Each case is different, and I can't predict exactly how yours will go, but I imagine that I can shed some useful light on the process for you.

XO--Colleen

[quote] There is a U.S. Gov't. protocol that gives a general recommended standard of care. You can access it from the OCF site, but I can't right now tell you how to do it.

Can someone else give us some help here?
[/quote]
Consider it done: The NCCN clinical practice guidelines for 2007 are found here on the main part of the OCF website.

The 2008 guidelines are available at the National Comprehensive Cancer Network website (from the NCCN home page, click on the box with NCCN Clinical Practice Guidelines in Oncology; registration is required, but only minimal information; then click on Head and Neck Cancers) -- Brian or Gary, would you put the 2008 guidelines on the OCF site? Thanks.

-- Leslie

Rita:

I can help you with the radiation part of this. But I need to ask you a few questions. Has your doctor suggested radiation or is it something they will decide after your surgery? Have you seen any oncologists? Have your doctors suggested you have a PEG or a port placed at this time?

Im not sure about the PEG tube for now since my oral cancer wasnt requiring a major surgery like yours. Im glad you have found others here who are familiar with your type of surgery. A PEG tube is sometimes a necessary evil to maintain nutrition while going thru treatment. If you cant take meds, most can be put down the tube. The peg tube isnt the worst thing I have had to endure thruout the treatments, its been a life saver for me.

If you need radiation, read all the info there is on here. Everybody goes thru this differently. For many, they must carry a water bottle with them for years due to dry mouth that lingers after treatments. That didnt happen for me, I was free from carrying a water bottle with me at around 7 months post treatment. My saliva isnt perfect, but its not too bad and I still have lots of time that it can get even better.

As far as taste goes, my taste has returned to about 75% with most things tasting right. I still have a few things that are a little off. Radiation can cause sores in your mouth, but also the chemo cisplatin can too. This will make it very difficult to eat. So between the lack of saliva, mouth sores, and lack of taste there is a reason for the peg tube.

After radiation and chemo you will go thru a period where your mouth and throat has very thick mucous. Thankfully this time goes quickly and only lasts a few weeks starting from near the end of radiation treatments. After that comes the dry mouth phase which lasts longer. Its all part of your body healing.

I know all of this sounds terrible, and it wasnt fun. But believe me, it can be done if its necessary. I think that the scariest part of cancer treatment is the unknown. Its great that you have found OCF to get guidance thru this. It was a huge help to me. Honestly, I dont know how I would have gotten thru this without OCF. Try not to worry so much, take one step at a time, you can do this.

Thanks, Colleen. Having watched my brother go thru so much in the past 3 yrs (colon removed and multiple surgeries due to complications) and scrambling to find help and relief for him when in the midst of the storm, as we were clueless in Seattle for many things he faced, I decided I did not want to go into this uninformed.

I am freaking out anyway, so I may as well know what I am up against and be as prepared as possible both mentally and with things like having a recliner to sleep in for the first while, and getting that mouthwash you rave about etc.

I so appreciate your time and effort in helping us going thru what you have been thru. I so help I can be such a blessing to others.

I lost my dad to colon cancer, my grandma to stomach cancer, my cousin to breast cancer that went to the brain and just lost a cousin this past Saturday to what started as melanoma and then went to the bones ... I am determined to beat this! I have a 3 yr old daughter and a baby granddaughter to stick around for!



I have another question though

My CT scan with contrast was what they based the entire diagnosis on, other than the biopsy results. The CT was taken back in May, when my troubles were really just starting to show up , when I realized something was wrong because extraction site was getting very infected and sore instead of healing and I went to ER scared ... anyways ... after that they removed a lot of bone and tissue to debrade the site to get it to heal ... etc and it wasn't found to be cancer until the last week of June and it was July I was seen at the UW for confirmation diagnosis and to discuss treatment plans ... It is now August that I am having surgery
and I feel they should do another CT scan to see if everything is as it was or how it has changed - is this unreasonable or is it unnecessary and I should just leave it alone? I really would like one done before they cut into me so we are all on the same page before they knock me out - I don't want to wake up with surprises ... Do I have a right to ask for another scan?

Thanks again - I best get my little one to bed. Catch u tomorrow.

Good Morning, Rita,

Hmmmmm I can't answer about the CT.....I, myself, would want another one, since we are speaking of margins here, and YES you have a right to ask for one. The problem will be whether or not your insurance co. will pay for another one. They aren't cheap. The gold standard, as I understand it, is the PET/CT. The PET shows increased metabolic uptake. Cancer cells have a higher metabolic rate than normal cells, so they "light up" on the scan. So, also, do areas of inflammation and infection. The way they light up will likely be different, with inflammation showing as a more diffuse area. The CT is much more specific as to the exact location of the tumor, so the two scans work together to id that a tumor is present and to show exactly where it is.

I would not think it would be unreasonable to have another CT...but it likely has to be pre-certified by your insur. co., so call TODAY.

Radiation...Has your dr. said that you are likely to need radiation, or is he saying that you might, depending on whether or not you get clean margins? A question I'd like to see you ask is whether, if you don't get clear margins, you could return to surgery to take a bit more tissue, trying for good margins, or whether at that time the best course will be radiation. Ask, too, whether he will recommend radiation if he gets clear margins. If he is trying for clear margins, which, of course he is, then it would not seem unreasonable at all for you to request a more recent CT or a PET/CT to more clearly define the surgical area.

I hope that I am not stirring up trouble for you, but I sure would call TODAY and ask for your dr. to call you back. Tell the nurse the nature of your call, and that time is of the essence. I would hope that you could get to speak with the dr. and not just have the nurse call you back.

and don't worry now about radiation. You have plenty of time to wrap your brain around that if he recommends it after your surgery.

Ask me anything else that I might know.....I wil be out of town for most of the day, returning by suppertime.

Get the mister bottle.....I like one with a trigger handle for my bedside. It gives me a drink without my having to actually take a sip from a glass or actually swallow. It just moistens my throat, and I can spray as many times as I wish and actually get a drink. Also, I preferred straws to trying to manage a drink from a glass at first. I still keep my nice lip moisturizer by my bedside, since I breathe through my mouth some, and I keep a little spray bottle of Biotene mouth wash for dry mouths. These three things stay by my bedside and have made my nights more comfortable. I don't have dry mouth like a radiation patient has, but the appliance gets dry, and I sleep without it, and so more air is in my mouth than is normal, though my tongue has taught itself to rest in such a way as to serve as a closure.

I believe that your surgery will involve a smaller area than mine, so this is why I have felt confident in assuring you that you are going to do very well.

Ask me a question so that I don't just rattle on. Get your nails done....and your hair trimmed...so you feel better...set up your favorite chair in the den so that you can be part of what's going on there. Get a bell, and a little clock that you can see...

Remember that your body will go through some shock, but that your surgery is in your mouth. The rest of your body will be un-touched, so there won't be any reason you can't go here and there. You can go in the back yard and watch your little one play, and you can go to a movie after a few days, if you can stay awake for it. You will need help. I'm glad to know that your sister is coming. Mine came too, and I couldn't have done it without her. She knew how much to push and when to leave me alone. And she drove me where I needed to go. I wasn't ready to drive. She stayed 10 days, and that was about right. I guess I could have made it with less help, since I didn't have any little children, but you WILL need help, especially with your little one, so let her stay as long as she can. You aren't going to be able to do everything by yourself, and you need a driver, and you need not to be by yourself too much at first. She kept me from allowing myself to get tootoo sad, and I fear that I might have without her here. With a little help, you are gonna be just fine!

later...XO--Colleen

Rita,

What did the path report say or what did your oncologist say was your diagnosis? Did he tell you a Stage?

Remember we are not cancer doctors, only survivors and caregivers who have been there in the trenches just like you are now. We can tell you our experiences and tips that will be helpful to you but it does help us tremendously if we know what you're up against.