Well, I made an agreement with the "powers to be in the Universe" that my "weight issue" was all I can handle in this life time. Apparently, I was the only one in this agreement. I think I was taking "keeping a room for my children" too literally since once pregnant remained looking pregnant and my children are grown (22 & 18). So, I ask this"power to be in the Universe," what will it take to finally loose weight and the answer I got was.... Oral Cancer. Personally, I was looking for winning lotto numbers so I could hire a personal trainer. 2006 white thrush appears on right lateral side of tongue. Rough tooth was the culprit. Thrush not going away and moving down towards front of tongue. 2008 lost job that provided insurance. 2008 biopsy=Leukoplakia. 2012 more appearing on tongue, thinking it could be candita, I get herbs and the herbalist says "it could get worse before it gets better". Next thing I know, tongue sometimes hurts when eating. Nov. 2012 biopsy = precancerous, 2 weeks later double biopsy (all Leukoplakia removed from right lateral side of tongue)= SCC. I can't decide which is more disturbing, not having insurance or the fact that I have plenty of boobs but I get it on my tongue. UCLA medical clinic is pushing me through. Tomorrow CT scan, Next day PET scan, Results day 1/11 ( asked kids to come with me-not sure if good idea) and they already have a surgery date 1/18/13. Not sure when to expect the winning lotto numbers but I am hoping it is part of this schedule. Never smoked in my life, once turned 45 started craving red wine (I never liked it before) and have a glass every blue moon. 1997-2000 chewed too much sugar free gum (lost alot of weight-divorce put it back on). It was mentioned that the cause could be HPV virus. Ironically, one of my 3 jobs these past two years is teaching seminars which I have found I love doing with a passion (Need tongue), another is working in that field (don't really need tongue) and 3rd job tending to young children (definitely need tongue). However, the more I read about Oral C,.... Well, I am not sure if knowledge is power or a doorway to allow fear in. The funny thing is my home also is in need of some major repairs. I believe that if I am given these challenges then the means to afford them shall also come my way. Ignorance is Bliss.
Can't really make out the signature stuff but anyone who has journeyed through Oral C on the tongue, I would appreciate learning anything that helped you make it through.

Flyfreemama - so glad you found this great place to be for all the latest in accurate information, plus the knowledgeable experience of compassionate people who have been where you are. You are right about "knowledge is power" but check out this site for information. Don't look up stuff on the internet. It's way too scary and often grossly inaccurate. Getting through Oral C is doable. Six years ago my son was diagnosed with SCC (squamous cell cancer) on the side of his tongue and he had no job, no health insurance, was severely depressed and newly divorced. He's doing just fine, now with new job, health insurance and a beautiful significant other in his life! You can get through it - just come here often, look up whatever interests you on the main pages of this site or in the search boxes. That way, you can be able to prepare any questions you have for your doctors or for anyone here.

For the "Signature Box", just go to the top of this page where it says "My Stuff" and scroll all the way down to the bottom and you will see a signature box. You can fill in whatever you like about your experience so far. Let us know what's happening with you.

Welcome to OCF! So sorry you are here, OC can be difficult but it is also very doable. Since you have found OCF, you are ahead of the game. We will help you get thru everything with support and info. Having knowledge is power and will help you to advocate for yourself.

So glad to see you have a close family and your children will be with you. Its a very good plan to always take along another set of ears to appointments. At this point anyone who offers you to help, take their name and number and let them know when the time comes you will call on them. Its never a bad idea to be prepared.

Best wishes with everything you are facing!!!

Hi and welcome. The scary part aside from the cancer is no insurance - there is an area on this forum that has information about what can be done to help with the insurance. I wish I could give you the info but I'm Canadian and gratefully so. I too have had oral tongue cancer. From what you've said this is not HPV related. Most HPV related cancers are base of tongue (down the back of your throat) or tonsil related. Oral tongue cancer is a dog of a different color. Usually it's a smoker drinker cancer often found in older men but the demographic is changing. There are quite a few of us here with no precursors for it (check out my signature) and scarily we've had people as young as 18 dx'd with it. I attribute mine to chronic irritation but drs can't say for sure. Usually the treatment is surgery followed by radiation and chemo. Rads is not fun and the fall out is long term in that it is considered the gift that keeps on giving. Dental issues, healing issues, jaw issues, swallowing issues, and taste, and salivary damage. Some times you may end up with only a few post treatment problems but sometimes people get them all. The best way to deal with it is working to offset the problems before they become an issue. So far my teeth are okay, jaw too, my taste is alright though not nearly as good as previously, and I'm only really dry at night. Chemo is unpleasant with issues like hearing, peripheral neuropathy, eye sight, and nausea, all being possible problems. Most are recoverable, though the hearing and eyesight can be permanent, along with the neuropathy. That said I only had minor nausea - others have had far worse.
Not sure how much of your tongue you are losing or if they're planning to rebuild it. But speech should be okay eventually it will heal then if you have to have rads it will flare up again for a bit. As of last Friday I'm 23 months post surgery, and 20 months post treatment. My speech at this point is 98% I only have a bit of a slur when I'm tired. My tongue was rebuilt from a flap on my arm, but I only lost about 1/3 - the more you lose the more difficult it can be - but we have people here who've had their entire tongues removed but can speak, and eat fine, and have a steady job. It sounds to me like your dr has been on it from the outset so hopefully it hasn't spread beyond your tongue. Is he planning to do a neck dissection too? Often that is the next place it pops up.
I know ignorance can be bliss but educate yourself. I say this only because you are the best advocate for you. No one will look out for your health better than you or someone who loves you. Some drs are great don't get me wrong, but when it comes down to it they have hundreds of patients and all it takes is one small error or miss on their behalf and you could then find yourself behind the eight all in a fight for your life. This cancer seems so benign - a small spot on your tongue, nothing like a mass in your breast etc.. But it can be highly aggressive and you may only get one shot at it.

Sorry I didn't mean to scare you - just give you a heads up. I'm not sure who your dr is or where you're being treated. I'm glad you've been booked into surgery so quickly. But do make sure you get the best treatment possible. Hugs and take care.

Yep, my hubby is in the middle of this 'adventure' too. I'm new to this forum, so probably don't have the right edequite(sorry).
My best advice is to get a high-powered blender.. not sure if I can mention the brand name or not, but it was manufactured in the US.
He downed as many protein, veggie drinks as possible to gear up for the surgery. Then the first few days at home, he just wanted ice.. comes out a bit like a snowcone.
Now he is back to protein drinks.. I sneak in a few items like olive oil, flaxseeds, grapes, kale and spinach. Every night I'm searching the web for more nutritious foods to add.

God Bless

Welcome! You are wise to seek and reach out to this site for information and patient experience. I understand your concern that by reading information regarding oral cancer has opened a door to fear. I frequently peek from behind the door to glean what I can handle. The good news is that someone, if not multiple people have and are going through something similar to you and can honestly answer questions or listen to you vent. Good luck and I hope you will continue to check in.
-k

Thank you to all who responded. I find that the more I read, the more it effects my ability to "Fight Cancer from within." I want to know what questions to ask this Friday when I get the results of all my tests but the more I read, the more overwhelmed I become. I don't know what to do. I believe knowledge is power but the more I read, the more it effects me.
What are the best questions to ask?

When looking at everything at once as a whole can be overwhelming. I break everything down..finances, medical, food, every doctor, every test, bill, assistance, etc. and try to deal with them separately to make them more manageable, and accomplishable. I even have a file system, note books, check lists to make its easier to track, locate, and file everything, including information. Everyone is also different in how they cope. For some, not knowing too much helps, but with me, information helps me more rather than hinder me, wether it's good, bad or ugly and fear the unknown instead, not the truth. I hate waiting, and get impatient, and always want to plan my next move on this journey. There are no right or wrong questions to ask, and maybe write them down ahead of time, so you don't forget any, take someone with you who can lend a 2nd ear, and support, and ask for a copy of the report. Hearing it's benign, not cancerous, is the best answer a doctor can give. Otherwise, there comes a time you either have to fight or flight. I think all of us choose to fight. Good luck!

Update: Parcel Service just delivered a package, and it was from MSKCC, whom I sent every record to for a consultation back in July. There is at least 500 pages of documents, 11 CD discs, but all broken down separately, which made it easier for them to review, as well as for my reference. I have a time line too, to highlight everything to bullet list for the past three years for the different doctors, when I initially see, otherwise it's even overwhelming for them, staff, and myself explaining everything.

Hi Paul has given some good advice. I get that it can be overwhelming. Do tackle things individually - write down a list of important questions and determine who you should direct them to. EG: finances to the finance department at the hospital.
Surgical and post op questions should be directed to your surgical oncologist (ENT) also pathology can be addressed with him at a later time- once the results are back.
If you have to have radiation you would direct any questions and concerns to the radiation oncologist when you are assigned one. Usually this is after your pathology results have come back. 8-12 days post op (some sooner depends on hospital)
I know this all can be scary but forewarned is forearmed.
Do write the questions and answers down as your head will likely be swimming at some point.
hugs and good luck.

Thanks Paul and Cheryld. I will take your suggestions.
Any question suggestions? I got the basics
1. What is the verdict and my choices
2. If surgery needed, Recovery process, What it will be like after surgery?
3. Letter for disability needed?
4. Care for tongue after surgery.
5. Physical, swallowing, speech therapy
6. Surgery date is set for Fri.1/18 and Plastic Surgeon said he doesn't do surgery Fridays. Can it be switched so reconstruction can be done at time of removal?
7. What to do if complications occur once home-who to call?
8. Can I be tested for HPV?
9. Recommended foods to avoid once a Cancer diagnosis has been made?
10. Pain medication plan.

Anyone got any other questions that might be useful?
Much appreciation.