Hi Everyone,

So, I figure I now need to hope on the internet and become informed. I avoided google while I was waiting for my first biospy results as I was, as expected, hoping it was just a simple benign lesion. Well, the whirlwind has started and there is no denial that I am now a cancer patient.

Here is my journey so far.

On June 28th, I had a routine dental cleaning (a new dentist for me, one I had been wanting to switch to for 18 months...and yes, that means it had been 18months since my last cleaning) While she was cleaning my teeth she noticed a purplish spot on the roof of my mouth. She took a picture and the dentist wanted to watch it, but thought it could just be an injury from a tortilla chip ect. Went back a week later and it had changed to a more grey and white color and a bump was slightly formed. My dentist was going to be closed for a week for the July 4th holiday and said he wanted to see me as soon as he reopend on July 11th. We were out of town that week so I saw him again on July 18th, he right away said I need to make an appointment with the oral surgeon and he want to make sure I made that appointment ASAP! He said to take this serious and it is very very urgent!

So, I saw the oral surgeon and he indeed said this lesion needed a biospy, it was removed on July 28th, he said he got the entire legion and things went well. On Aug 3rd I went back in for after surgery check and the biospy results. My oral surgeon was shocked to give us the news that it was cancer, mucoepidermoid , the tumor graded a low 2 but with no margins (I am not exactly still sure what all this means. So now referred to Dr Futran at Univ of Washington Med Center...great Dr. so that was a sigh of relief as I did not have to "shop around".

On Aug 10th I had a CT scan and that came out clear, nothing in the bones or lymph system...but I am scheduled for the 2nd surgery (resection) and biopsy on Aug 31st. He said it should be straighforward and no bones will be disturbed. So much more was said but quite a blurr right now. He said they will re-grade the cancer as a whole and we will go from there. Of course the word radiation came up but surgery might just get it all.

So, this is my week to get things in order. I am a 39 year old mom of 3 boys, ages 9,8 and 6. I am very healthy so this really shocked me! I homeschool my kids and we love every minute of it so I need to pre-plan a tiny bit for the possibillity that recovery might be a long road...but praying for the best outcome!

It has been a crazy few weeks, not much sleep and I have soe pain in my jaw after my first surgery (due to teeth sensitivity) and a very dry mouth which wakes me up when I actually do fall asleep. I am not sure what to think as this is a while new set of terms for me. I get the whole lingo thin as I am a pilot...but never thought I would have to learn a whole to lingo!

Thanks for listening....

Hi, Mom of 3
Welcome to our forum - and sorry you have have to be here!
I also feel happier with preplanning, and got as many of my ducks in a row as possible.
I would consider three possible issues moving forward:

1. Child care while you are getting treatments/surgery. If they schedule you for radiation, that will involve some long appointments for 'planning' the radiation and getting you set up for it - you probably don't want the kids along for that. The actual radiation sessions don't take long, but the waiting room may not be the cheeriest place - you will have to decide if the kids should come too, or not.
2. Talking and fatigue. Surgery and radiation may make it difficult to talk for a while. This may put something of a damper on the home schooling. Do you have a friend that homeschools that could help? The home schoolers I know have pretty good support networks.
3. Driving. If you have to be on heavy pain meds, you may be willing to drive yourself, but I'm pretty sure you won't want to drive the kids. This is an area where you can easily ask for help - I had a whole list of volunteer drivers for my husband in case I got sick. As it turns out, we never had to use any of them, but it was wonderful knowing the help was there if needed.

Also, in your post you noted: "So much more was said but quite a blurr right now."

Always take a notebook (and a friend to take notes, it possible) to your appointments. Write down your questions beforehand, and the Dr.'s answers. I asked my husband's doctor for the best case scenario on the healing process and what to expect, and his answer was pretty close to what we have been through.

So glad you found this place. You will get the very best and latest info, plus knowlegeable and compassionate help from people who've been where you are. Sounds like your dentist put you on the right tract to get the biopsy. It is really good to plan ahead and find out as much as possible so that you an ask questions and get the answers you need. It's a good idea if you can have someone go with you to appointments so that you can ask questions and have help remembering what was said. I went to my son's appointments and a couple of times we took his 5-year old daughter with us. I think it helped her to understand and think positive about what was happening to her Daddy. Everybody reacts differently to treatment and some have it easier than others. The waiting room where my son had his Rad Tx was very pleasant with a very nice "cookie lady" who came and talked to everyone, offering them cookies or drinks or to share experiences. A couple of times, a very nice therapy dog came to visit, who had the kindest eyes and only approached anyone if they indicated or showed interest. About the dry mouth, you probably keep water by your bed at night but perhaps a plant mister might help. My son kept one by his bed so that he could spray and moisten his mouth which allowed him to not wake up as much as having to get a drink of water. Do avail yourself of the search functions on this site - it will help in deciding what questions you might have for the doctor at your next appointment. And let us know how you are doing.

Welcome to OCF! You are in the right place to get lots of info and support. I was kike you, cancer didnt fit into my life but somehow I had to put everything on hold and deal with it anyway. You will get thru this! It wont be easy, but you can do it!

As far as your children go, you have your hands full. Every single time someone offers to help, write down their name and all contact info in a notebook. Tell them you will let them know when the time comes what they can do. Even something as simple as picking up a pizza or taking the kids out for ice cream could be a big deal. There will be a million little things that people can do to help out, cook a meal for your family, take the boys to the movies, do a load of laundry, pick up medications or even making sure the homework is finished will be helpful.

Being treated at a cancer center is the best choice. There they will treat many similar cases per year. A whole team of specialists will get together and discuss how to best treat you.

Dont worry about the lingo, you will pick it up and be talking 'medical' in no time. Best wishes with everything!

Thank you all for the great tips - I really will need to learn to let others help - I am so used to being SuperMom! I do have quite a network of support, and a good friend went through Breast Cancer 5 years ago so I have a friend that gets it

I love the spray bottle with water idea and will try that tonight. I cruised around the forum tonight and wow, there are alot of great things said about my doctor, Dr Futran and Carol my NP. He was great on the first visit, talked in plain english, not medical-ese, but then I forgot so many questions (or maybe I am thinking of them now) Mostly about the actual surgery, I have never had a surgery (except the oral surgeon that took the lesion out) but I have no idea what to prepare for general anethesia, except they said no ibuprfen. they precleared me for the surgery so I do not go back in until that day 8/31...see what happens when I stay up late and can't sleep, I start thinking!

Hi Mom of 3 boys...welcome to OCF. I promise you have found an awesome support system here.

You may want to call your NP and talk about any medications you take. I know when I have surgery I get a list of medications that is rather long and you only mentioned ibuprofen. I think their main concern is anything that thins the blood but you would be surprised what actually does that. It can't hurt to check....it wouldd stink to get there and have to reschedule.

As far as anethesia, everyone is different. They give you so many drugs but I think the most common main drug is propofol. Some hospitals will give you something to calm the nerves while your in pre-op (a cocktail they call it at my hospital) through the IV. It totally calms you down on the way to the OR. Just try to realx as much as you can..I found the nurses in pre-op, the anethesiologists (sp?) and the nurses in the OR and very kind people. They do everything you can to make you feel at ease.

It sounds like you have a good support system which is important. I know it's hard....but try to not be supermom. Let people help you because you will need it. I have an 8 month old and had a procedure in May. I was in a lot of pain and all I wanted to do was sleep. My father in law came to our every day in the morning before Nicholas got up and stayed until my husband got home from work. It was great because I was still with him but I could go to sleep when I wanted to which is huge. You will need to rest to take care of yourself for them. Having cancer is hard enough....when you add kids to the mix it even harder.

Finally...I would talk to someone before surgery about pain management. I was diagnosed in 2007...I've had 4 surgeries...multiple biopsies and participated in 1 study. All very painful and I just met someone who does pain management. I sure wish I had met her before!! So, ask if there is anyone that does that at the hospital you go to.

Good luck and I look forward to supporting you through your journey.

Hi there and welcome... Everyone here has given you great advice I just wanted to welcome you and tell you that is completely understand your shock. I'm just a few years older than you and I too was completely healthy. I don't smoke or drink and am a veg head so imagine my surprise. I'm fortunate in that all of my children are university age - I had them very young - so that was one less thing to worry about. Please take one day at a time and good luck on your surgery. I know everything is a blurr right now but try to educate yourself - it can be scary - but knowledge is power and knowing what to expect demystifies things and allows you to advocate for yourself. Take care.

Hi there...sorry you had to come here but glad you found it and have a great doc!

I hope they get clear margins for you and you can heal without having to have adjunctive therapy(rad and chemo).

Glad you also have a good support system...but you need to be ok with letting others help you when you need it, and don't beat yourself up if you can't do some things for a while. Think of it as a not so fun vacation,

As for dry mouth...I tried humidifier by my bed and the spray bottle, and none really did anything. So now I just use dry mouth mouthwash before bed and when I get up. I still wake up with a very dry mouth, but it's manageable.

Will keep you in my thoughts and hope for a swift recovery and clear margins!

Well, I just got the call for my surgery time tomorrow. My surgery will be at 1:00 pm at University of Washington Med Center. Pretty anxious today...waiting...sigh...the day is almost here!

Thanks for all of your tips, the spray bottle really helps the dry mouth.

Praying for an uncomplicated surgery and CLEAN margins!

MOTB: I'll be thinking of you tomorrow. And for the clean margins to be sure.

I hope your surgery goes very well. Good luck tomorrow! Please let us know how you're doing when you can.

Me too good luck and heal well.

Thinking of you today. Post when you can and let us how you're doing. Just remember....you can do it:)

Hi All,

So surgery went pretty good - dr had to go a bit back further again my bone than he originally thought, he said there was evidence that the tumor had been pressing up against the bone (back jaw)

Never realized I would have such a sore throat after all the tubes during surgery. I go to go home the same evening so it was very nice to be able to be at home in my comfy bed. So far recovery has been fine - they said I was so pumped up with steriods. Dr futran used bio skin to patch the "hole" so he warned me the forst 24 hrs I would feel great and then hit a brickwall...and yep, starting hit that brickwall.

Very greatful for pain med except they are not working for the sore throat and my right ear feel plugges, like it I had a bad cold.

Now, a week to wait for pathology - still holding on to hope that there was clean margins!!! I am so happy this step in fighting this is over, and hopefully it results that this is all over...but I keep hearing it is likely the tumor get upraded after a 2nd surgery. let's hope it remains a low grade 2 !!

Thanks for all your thoughts and well wishes. they hope results are back for my post op on sept 6th but he said the holiday weekend may delay it.

I will have to say University of Washingon Med Centers surgical staff was awesome! I am so grateful that Dr futran was my surgeon as I hear he is the best, so I felt like I was in good hand. The resection looks like they removed about a 1/2 dollar size area and all the way up to the bone on top and over as far as he could (the jaw bone) on the other side.

so far I can sip on a drop of water at a time and I can very slowly eat some yogurt...I let it sit out for warm up and can get about a Tablespoon down (take 20 minutes though!) so, if anyone had food tips that would be awesome

Thanks again for such a great community here!

So glad to see that the surgery is done and you are in the comfort of your own home already.
Maybe try a very thin soup or consume (warm not hot) until you can start to add say thin short noodles even if they do slip straight down. If the yogurt is too thick just thin it down with milk or water.
Did they not give you any advice on nutrition before you left the hospital? Did they give you the number of the nurse in charge or someone that you can call if you have any questions before the 6th. Don't hesitate to call if you are having difficulties no matter how minor you might think it is.
Best wishes for the results.
Gabriele

Momof3boys,
So glad your dentist was proactive. Nice to see another homeschooling family on here. My boys are 09 and7 and their dad is the one who homeschools them. I want to eventually, but benefits are important now. Yes, getting the news when you are not expecting it is very difficult. You and your family will get through this. If ever want to talk send me a PM. I will be praying for a speedy recovery for you.

Day 4 of recovery from my resection surgery! UGH! I was not prepared for how much pain there would be. Dr did tell me that it would be worse Day 3, 4 and 5 and then begin to get better. all I can think of today is that I am so ready to get off this crazy ride and have this all behind me...

I did manage to get some jello down and I can drink water a bit better. I force myself to eat a few extra bits, I figure the first bite hurt so I might as well get as much as I can in my tummy. On the bright side, being preoccupied by the pain helps me not think about the wait for this next pathology report.

One question, is it common to have such severe ear pain? I feel like I have a horrible ear infection. I think it may be because the Dr scraped the back of my upper jaw bone???

Thanks for letting me vent

Hi, Mom of 3
sorry that you are having so much pain, but glad to hear you are managing the water and jello. My husband's tonsil cancer caused a lot of refered ear pain - depending on the exact location of the resection, it could impact the nerves. From what your doctor says, however, it sounds like it will start calming down soon.

My husband found that Carnation Breakfast Essenstials (Vanilla) - the packets blended with milk - were the easiest to get down. The Ensure stuff is thicker, but offers more concentrated nutrition.

Best wishs on your recovery, and fingers crossed on the path report!

I live on Ensure on the rocks...lol it gives you nutrition that is needed when you are healing and it doens't taste too bad either.

The pain is normal...just hang in there and take the pain meds they gave you. I would also take a stool softner too...if you are taking them regularly they can make you constipated. It can't hurt to ask about the ear pain...I always ask my doc if I'm unsure of something.

How are your boys?

Hang in there and take one day at time. I know you want it to be over but in my experience it took a couple of weeks so try to patient. It sounds like your doctor may be a tad optomistic (sp?) but I hope they are right!!

So, I had my first post=op appointment today and got my pathology report back. They upgraded it from a low grade 2 to a low grade 2. I go back weekly for the next few weeks, and then a CT/PET scan in 3 months, The tumor board decided that it is best to just watch diligently with scans and visual checks, Dr knew he did not get good margins but feels next step if needed is another surgery to obtain clean margins. He said there is still room to work with before we treat things too aggressively. So...I am happy with that, time will tell and I just pray all stays as is for the next 5 years so I can be considered cancer free....

It does make me a bit nervouse as I hear that many times tumors like mine get upgraded to intermediate grade

For now I am just focusing on recovery from this surgery, still in alot of pain but on the slow slow road to recovery!

That actually sounds quite encouraging. Focusing on recovery is definately the way to go! Remember to ask for help with the boys so you can treat yourself now and then - maybe a movie or browse at the mall or an antique store. Toes crossed for the upcoming PET - can't type with fingers crossed ;-)

Hi Mom of 3...was there a typo maybe? Your post says they upgraded from a low grade 2 to a low grade 2?

Of course I am happy to hear you are on the road to recovery!! It's a shame they didn't get clear margins...I wonder why the doctor didn't take more when they said they knew that was the case?

How is the eating going? Make sure you are getting your nutrition..it's very important for recovery and hard for us OC patients it's not always easy!!

hi mom of 3, i've been following your thread from the beginning and thinking about you. hope all continues to go well and your pain subsides very soon. i will continue to check in on you.

Ooops that was a typo It was upgraded to a low grade 3.

so, I went for my next check up yesterday and all looked to be healing well. I turned a recovery corner when the stiches (holding the "bio" skin stuff on...I forget what that stuff was called) and that really made things more tolerable. I am still on Ibuprofen 24/7 as the swelling really effects my ears and throat. My nurse prac. check nad no inner ear infection but it hurts just as if I had a bad one. She said everything looks healthy and great. I guess a bright spot is that she said my "hole" is just small enough that she would not suggest a prothesis for my soft palate(?) she said my tissue will fill in enough and in the long haul it will be so much better. (plus, more surgery is very possible)

As for eating, each day gets better but I stick to very soft pasta, fish for protein (as Dr suggested) and that slides down easy, cheesy things work well, diced peaches and pudding. My wt loss slowed down so that is good, in fact today I lost none!

So, since healing is good, I dont go back for a check for 2 weeks and then I scheduled my next recheck with Dr Futran for Dec 7th. He told the nurse prac. that he woud most likely not do a scan at that time. Hum? Sometimes it makes me wonder why there is such confidence that there will not be a reoccurance when I did not get clean margins. But I do trust him and he is known for being the best and it was reviews by the Seattle Cancer care alliance so I guess I will try not to worry but hard when I read about lots of reoccurrence when clear margins were not obtained. Time will tell. BUT I am officially on the 5 year countdown to being cancer free!

Glad to hear you are healing quickly. Not sure if your doc was going to have you do a CT or a PET scan. I know if it was the PET scan that those tests have a high number of false positives. Any inflammation will light up the PET scan. That could be why your doc put it off.

Keep up the great work with your eating. Here is a list of easy to eat foods. It might have some items on here you hadnt thought of trying. Hope it helps. Keep up the good work!!!

http://oralcancersupport.org/forums/ubbthreads.php?ubb=showflat&Number=94621#Post94621

Congrats on healing so quickly glad things are going so well for you. And Christine is right sometime you need a bit of time to heal prior to a scan. Take care and healing vibes to you!

hey momof3boys!!! so glad to see you are healing well. sorry you still have pain in your ears and throat and hope the swelling goes down soon, very soon! keeping you and your family in my prayers.

Welcome! Sorry I am so late. I too had MEC. Thankful yours isn't as severe and that your dentist was proactive!!! I hope you are recovered from your past surgery and enjoying your boys! I'll be praying for good scan results!!!

Hi mom of 3...so happy to hear that things are going well. You sound like you're in good spirits and that is so important.

How are your boys doing? Is someone helping you home school them?

Thanks Suzanne - The boys are being so great! Such great helpers and we started school last week, we are taking it slow (reading and math) and do the best we can...they really understand that Mom gets tired pretty easily but I am so happy to have them with me, times like this make you treasure TIME! This week we are gettng more serious with schooling and I have some online work for them now so that helps that I dont have to talk so much.

Good news, I have gone 48 hrs w/out prescription pain meds (just ibuprofen first thing in the morning and I can make it until early evening before I have to take more) So things are getting much better! Doing school with the boys sure helps keep my mind off things.

Big challenge now is my husband is traveling with work starting saturday for most of the month of October...ugh! So, huge blessing I turned a corner in regards to pain!

Hope you all have a great week!

I'm intrigued that they didn't check pathology while you were on the table. They've done that on both of my previous surgeries this year and will on next week's procedure. It does mean being anesthetized for two hours each time but allows them to remove more tissue right then instead of having to heal and go back for more.

Very pleased that you are healing well. Sorry you are still in pain but hang in there, it will get better each day!!

Sending healing vibes!!

So happy to hear things are going so well. I'm sure school keeps you busy and time with your boys is precious...no doubt. I look forward to hearing more good news!!