Hello!
Just found this site this morning. I'm so glad, I know it will be a great tool to be able to read and ask questions to those of you that have already gone through this journey!

My name is Elizabeth, I am 29 years old. I from San Antonio, Texas but I am getting treated at MD Anderson in Houston. I was diagnosed on March 27th of 2009 with a Low Grade Mucoepidermoid Carcinoma (Salivary Gland), its classified as a T4N2M0. I have no history at all, never drank or smoked. My only exposure to chemicals is to chemo because I'm also an Oncology nurse. Yes...you read that right, I take care of cancer patients for a living and now I am one of them! I had very little symptoms, a little trismus but I could feel a small lymph node enlargement on the right side of my neck (drs have a hard time feeling for it but scans show it is there). The only other symptom is some right ear discomfort, dating back after my 2nd daughter was born (about 3 years ago), I would get it checked out and it was either an ear infection or ear wax buildup. It wasn't until I was pregnant with my 3rd daughter that things progressed, and when she was 6 months old is when I went to see my PCP and he noticed the mass on the right side of my tonsil. He was amazed that I had no problems swallowing or sore throats, choking on food. I've seen numerous doctors even ones I work with but MDA is the best at this and especially since my CA is a rarer gem, this is the place I felt I needed to be.

I've been through 3 round of chemo, I'm scheduled for surgery on June 30th and then I will have radiation (+/- cisplatin). As far as surgery, it looks like they will do a free flap intraorally and have mandible reconstruction, take some of the right base of my tongue as well as the tonsils. Neck dissection as well, I will be trached and have a PEG placed. I meet with the head and neck surgeon again tomorrow and tonight I'm trying to write down my questions, last I saw him I was still in a bit of shock form the news that I didn't ask anything, I couldn't believe he wanted to take my jaw!! I've gotten copies of my CT scan and don't see anything about it invading my jawbone, so I'll be asking him why he wants to remove it.

Has anyone on here had a Salivary Cancer? All the drs I saw thought for sure I had SCCA but after two biopsies and different pathologists looking at it, it was confirmed that I didn't.

I look forward to getting to know everyone on here!!!

Welcome to OCF Elizabeth. I am so sorry you are here being so young and especially in your line of work. You will find so much support here.

Your cancer is rare, almost everyone here has had SCC, myself included. I was also told if the radiation and chemo didnt work, my upper and lower jaws would be removed and rebuilt using bone from my leg. The radiation and chemo worked for me but I did have a recurrance a few months later. The doctors think it was just a tiny piece of cancer that wasnt taken care of the first time. It was cured by surgery which resulted in severe trismus. Please be very careful with trismus. It only gets worse and worse, please keep a very careful eye on it. Stretching exercises do work, I also saw a physical therapist.

You mentioned a peg tube. Are you also getting a port? If you need any pointers on PEG tube feedings, I have learned several tricks for that to be successful too.

It helps if you try to take someone with you to help write down your questions and answers for doctor visits. Also, now is the time to line up all the help you can get. Even for simple things like driving you to the pharmacy or treatments. If you call the American Cancer Society, they may have some things available to help you too.

Best of luck with everything.

Search for mucoepidermoid in the box in the upper right hand corner of each forum page, and you'll get several pages of results. You can click on a poster's name to get his/her profile information, including e-mail/private message.

Yours is the second case of that particular cancer I recall seeing here in the last month; the other one was also in a young (30 yrs old) woman.

This is a terrific site for both information and support. I wish you all the best in your continued treatment.

Hi Elizabeth,
Sorry to hear of your recent dignosis butI'm glad you've found this site. Its been very very helpful to me.My MO was at MD Anderson for awhile before he came to Cal Pacific/ UCSF. I'm glad you are under the best of care for your condition.

I knwo with younger patients the tendency so to be as aggressive as possible and to avoid any possibility of recurrance. Maybe they have identified a possibility that it may have invaded the jawbone? Severla people ehre have had the jawbone replacement surgery and I know that it has gone well and been successful for most of them. Being young you will fare better than someone in thier older years... When they told me they were going to have to take almost all of my tongue and use some of my forearm muscles I was just baffled by how it could all possibly work and how I would ever possibly recover! eat again talk again... but you just put one foot in front of the other and put your trust in the Drs. who know this disease well and build a strong network of friends and family you will get through it.

I have recoverd very very well for all that I've been through. You body will heal itself and adapt and compromise.

The most important thing is to get the cancer out and gone forever.

I'm very sorry that you are going through this. I'm glad you have an excellent medical staff and supportive and loving family.Must be a very surreal going through this as an oncology nurse I can imagine.

We are here for you! I am praying for a very successful outcome with your treatments and upcoming surgery.

KATE

Hi Elizabeth,

I am sorry to here about your diagnosis. I use to live in Houston and San Marcos (went to Texas State)....So I know San Antonio and Austin a bit...I know MD Anderson is one of the best but did you ever consider getting a second opinion or second biopsy?

Mistakes do happen...

Thanks ladies!
christine- I have a picc line in place. My hubby comes with me and becomes my secretary!!LOL Although its hard for him b/c he doesn't get the medical lingo and writes some off the wall stuff!!LOL I have been stretching my jaw for the trismus but I have noticed it getting worse, I tried to eat a tootsie pop and it wouldn't fit inside my mouth. I meet with a therapist tomorrow for some exercises and I believe they should fit me for some machine to do some stretching exercises.

leslie- I'm off to search for those posts! thxs!

kate - I looked up my first ct scan and it said this " lies along medial aspect of mandibular ramus" but then says "no gross bony invasion" so I guess its just on top of the jawbone and not through it, he may be just wanting to take the bone just in case, for clear margins??? but then wouldn't radiation take care of any microscopic cells that may have been left behind??

Ray1971 - I went through 3 sets of doctors and 2 biopsies, I would have loved for it to have been misdiagnosed but unfortunately it isn't so, I can see the mass myself on the righ tside of my tonsil and when I check internally on the base of tongue, it is fusing with the tonsil.

For a long time i have been wondering"is it just me?" but i dont think it is anymore.When Margaret Hupe,myself and a few others were in the thick of caring for our husbands, everyone was quite surprised at how young they were.then Kate joined the forum and we were all horrified that someone her age was suffering so badly.Now it seems nearly every week we get a younger new member.Is the diease on the increase or are we getting the message out there and its being picked up quicker?

This is going to be one helluva fight for you with such a young family and i wish you all the best .

As for your question,Rob had a lemon wedge dissection of his tongue and they knew he had cells left and thought rads would mop up any stragglers. You can see from my signature they were wrong,so perhaps it will be better not to leave anything to chance

love liz

Liz,

I have been questioning this "new" type of OC for about a year now on this site. Used to be mainly tobacco/alcohol, then HPV and now we are seeing more and more very young patients that don't use tobacco, light to none drinkers and HPV-. SOMETHING else is causing OC and no one has discovered the why.

Elizabeth,

I know MDA has a great history but I also think you may benefit from a second opinion from another CCC. For one, I don't see the need for a ND, especially if they are recommending chemo and radiation. Being on this site for 3 years now I continue to see what I call (I'm a CPA not a doctor now) unnecessary ND's and I see a ton of those patients have long term issues because of that surgery. I saw 5 doctors and 3 recommended a ND and Moffitt told me that they didn't think I would need one because the radiation/chemo would do the trick. They did tell me that they could always do the ND post Tx if it was as successful as they thought. I am coming up on 3 years post Tx and everytime I read about someone almost bragging about an all clear ND or post ND issues I thank Moffitt. I see more ND's before someone is seen by a CCC so I guess I'm a little surprised by MDA's recommendation. Perhaps they are dead on( chances are) but it is your life and you are so young so would it hurt to have their recommendations reviewed by another CCC?