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

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.

Hi David, the pathology report said squamous cell carcinoma at tooth site #1 - they have not given me a stage yet I suspect that will come after surgery? will be asking doc.

the ct scan (taken in may way prior to them thinking cancer) said erosive change involving the posterior aspect of the right maxilla. soft tissue density with heterogeneous enhancement measuring app. 2.1 CM in greatest diameter. Uncertain whether this mass represents mass or granulation tissue. density measurements are greater than expected for phlegmon or abscess. chronic inflammatory change and osteomyelitis are not excluded. lower density material within the adjacent maxillary antrum likely representing mucosal thickening.

Have they considered the nodal areas on both sides of your neck which is where SCC normals drains to outside the oral cavity? I would want that area Pet scanned at a minimum. I would also want my chest cavity scanned. This is your life and this cancer is not something to treat litely. Were you a tobacco user?

according to the staging thing I see on this site this would be my guess according to the medical records I have copies of - (let's see if i am right


Stage II / T2N0M0 / G2

(why do they have to be so technical LOL)

[quote=azcallin](why do they have to be so technical LOL) [/quote]

Lets them charge more Can't baffle you with BS, so they blind ya with science!

ROFL - Thanks, Kevin! I needed that laugh this morning!

David : My Dr at UW said he did not suspect any node involvement but only did checkup with feeling with his hands at this point (unless he could see nodes on CT with contrast? but I think that was only the neck shown) but he has not seemed concerned about them. He said he felt this was caught early and is quite localized. I will ask him about doing a PET scan when I check in Friday for another CT scan before they start surgery. I agree, I don't want to take chances.

I had an endoscopy done in 07 with biopsies which was all normal but they did that because I was having a hard time swallowing and it got worse and worse to where i didnt feel i could even swallow water to take my meds... they did mri, endoscopy with biopsies and barium xrays and diagnosed me with severe acute acid reflux and put me on nexium double normal dose. this helped some but then my other doctor treated me for thrush and 99% of symptoms were gone within days. (long term prednisone use caused the thrush she said)

upon reading symptoms of what i am now facing i am wondering if the two are more related than said so far? don't know ... but yet those symptoms of problems swallowing have never gotten bad again ... occassionally rice or something will "feel" stuck if my throat is not moist enough or take more than a tiny bite but for the most part all of those symptoms have been unnoticed since so i am hoping the two are not related and that the localized problems found are all there is to find ... oh how i hate the unknowns and the what ifs - this is why we don't dwell on them I guess, right? POSITIVE ATTITUDE until we have something to worry about and then one baby step at a time.

Thanks for your post I will definitely speak with him about that PET.

oh and yes I did smoke - for 25 yrs. Don't anymore but it may well be a factor, though I was not the "heavy" smoker they say is the most common victim ... they said I was not a 'likely' candidate... but hey that is how life works

Then I would also ask for my cells to be tested for HPV. It's not clear what causes the cells to go malignant in the first place but if a person uses tobacco then it is assumed caused by tobacco. If a person never smoked they will sometimes get tested for HPV and if it comes back positive then HPV is presumed to be the cause and recent studies have shown a distinct biological difference between the two SCC cells. That same study concluded that HPV+ SCC responds better to treatment and (therefore) also has a lesser chance of reoccurrance. There is also a small percentage of SCC that isn't associated with either including the ones associated with eating betel nuts. Since I hadn't smoked for 30 plus years I pressed to find out how I got this cancer and I felt better knowing than wondering.

No smoking for me for 37 years before DX.....no HPV (insisted on being tested)..and no betel nuts either.

I wish that you could contact your dr. with your concerns and ask for a PET/CT several days before your surgery. Isn't your surgery to take place THIS Friday?

I wouldn't be comfortable going into surgery without a bit more clarity about what my problem is.

The PET/CT is a full-body scan, and it is wonderfully reassuring.

XO

Yes surgery is Friday - He is doing the new CT scan at 7 am and said he will look it over and go over it with me prior to surgery.

I will ask him about the PET scan when I call in as well.

So much to absorb ... and still so much to get ready for my kiddos before I go in so my sister doesn't have a hard time tending to things with me out of commission.

I have the same idea about the Endoscopys I have had over the yeras. I have barretts esophagus and have had The Nissen Fundaplication where the Dr wraps 1/3 of your stomache arpound your esophagus. This was done every 3 months and sometime 6 mo. Strange I ended up with OC as well as Barretts. It makes me wonder if there is a connection between the 2. Good luck with your surgery and with the great attitude, you will win. This from one winner to another. LOL

Jim, there is not a connection. The cellular change which causes Barrett's (which by the way is precanerous condition and not cancer) is caused by repeated damage to the lining of the esophagus by the acids in your stomach, and is in actuality a defense mechanism to prevent further damage. The cancer that is associated with Barrett's is adenocarcinoma predominantly... spoken by someone who has been down this path. GERD, proton pump inhibitors, fundoplycation, Barrett's, adenocarcinoma, surgical removal, etc.

Brian....you had ALL THAT??? My goodness, you are a man of steel!!

XO

It's actually my new weight loss plan.... every few months they just cut another little piece out. I won't be taking my shirt off at the beach anytime soon. Shrapnel wounds, PEG holes, gall bladder removal, esophageal surgery, neck dissection, and that is just the stuff in the front.... I look like I came out second place in a knife fight. But hey, I'm still here.

I believe you beat my record......but I had a jump-start on you, with numerous c-sections and other girl-stuff. You guys have to start later with the body-art!....no shrapnel for me, though (I didn't know that either. Thanks!)(My hubby is a Vietnam alum also......I guess that's where you got your shrapnel. Oops, maybe you're not as old as we are. Sorry.)

Badges of honor, eh? I like to think so. or at least prizes for living this long!

XO

Proof that we are Warriors!

I have a wonderful array of battle scars myself. No shrapnel either, but biopsies, gall bladder removal, knee surgery, failed port-a-cath, Hickman line, laparotomy (that's the biggest - from my navel to my pubic bone), 2 PEG tubes, and of course, my donor site on my wrist and the the skin graft site on my thigh.

And of course, my tongue.

Apparently, some people find scars sexy. Who knew??

Unbelievable, Brian... I read your brief description and think to myself 'how dare I complain'.

I have several scars other than the neck dissection scar too from port, chest pump when my lung collapsed, and lumpectomy (which is worse than usual b ecause of the post-surgical infection). Not to mention a scar from some stiches under my nose I had to have to fix a wounded face from an accident I had when I was a kid (too long a story). I definitely view the cancer-battle related ones (which are most of them) as battle scars. I'm dreading being told I might need a hysterectomy next month after they do my D&C. If I get one, I will see if I can have the kind that doesn't leave a scar but after a while you don't care. I wore kind of a low cut shirt the other day (it was hot) and later realized it showed both my port-a-cath scar on one side and the round chest tube scar on the other. I asked my hsuband if I should change ad he said "if you don't mind, I don't mind" and I thought about it an realized I really don't mind. I'm turing 50 in a few weeks and if it weren't scars it would be wrinkly skin that would worry me. Actually, wrinkly skin doesn't really worry me too much. I'm just happy to be having a 50th year!

Nelie, I hear ya ... I have some scars from previous trials of life, but none of them worry me ... Not near as many as many of you all but that is okay, I do not mind that I am behind on this one (smiles) ...

A few years ago a good friend of mine battled breast cancer. They showed up to visit and her husband told me before she came out "wait until you see her cute lil bald head" !!! I was like "WHAT!?" as I had not yet heard she had cancer ...

She came out and I had to admit she was the cutest gal with a bald head I had seen and she wore it with no worries and did not wear a hat or scarf unless we went out to dinner.

This surprised me as I had known her since I was 15 and she had always been one to worry about her looks, esp her hair and makeup and each week at church you would wonder what color or style her hair would be this time .. and here she was bald with no worries seemingly.

When I told her how I admired that in her and hoped that I would have the same courage should I ever face that in my life, she said "" Hey, I am fighting for my life - no hair is the least of my worries and I don't care who knows it. ""

That has always stuck with me... and spoke volumes to me about her courage... she became a hero of mine that day.

I so admire people who can be 'real' even when facing adversity and people who look inward, not outward, for strength and identity.

I look around this forum, filled with people helping people like me who are new to this and scared and all I see are a bunch of beautiful people!

Here is a link to Brian's story which can be found on this website


http://www.oralcancerfoundation.org/about/brianhill.htm

Oh, right, of course! How could I forget my neck dissection!

Eesh!

I know there is a lot to absorb but try to take this time and read as much as you can and ask us any question you need to. Take time to write down all the questions you want to ask your doctor and DON'T let them do something you still have valid questions about until you understand the why's and why not's.

I understand it very well Brian. LIke you I look like a battlefield without a shirt on. LOL. With all the weight loss, the scars really are prominent, The one form the Abdominal Aortic Anneurysm looks like the erie canal and the ones from the esophgial surgery look like 357 magnum scars. The ones on my shoulders stand out big time, but the ones on my elbows are just noticeable if you look for them. LOL Look like a road atlas.

hi rita - just wanted to let you know i am thinking of you today (as are many) and pray your surgery goes smoothly & recovery even smoother : )

all went well with my 2nd maxillectomy on monday (less some confusion regarding the prostodontist, grrrr) recovering yet again but up and about. do not despair, it can be shocking at first, both physically and emotionally. i promise, it will get better!

rest up when you get home. try not to worry about the house and family, just take care of yourself and know there are many out there routing for you!

marieka (nervous)

I'm going to start a new thread, since this one is getting so long. I'll name it "Rita's maxillectomy surgery is today."

XOXO