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.

How about asking what services the hospital offers, like therapist for cancer patients, speech pathologist, nutritionist, etc. There should be a team of these professionals to work with you to help you with your recovery. You can also ask about having a visiting nurse, they can be a huge help. Since you dont have insurance ask about financial aid programs the hospital offers. Many have programs available but they dont offer them to everyone, you have to ask.

Good luck!!!

Dear FlyFree,
Yes, there really IS life after tongue surgery-although, I won't lie to you, dealing with not being able to be clearly understood (or being ignored altogether) is probably the hardest thing I've had to suffer throughout this whole toboggan-ride. (not to mention drooling all over myself!!!):-p... Of course, this is just MY experience, of MY feelings being on MY sleeve ;-) and of course, your experience will be different.
I've found over and again that my PERCEPTION and feelings ABOUT what happens is generally as (if not more) important than what actually DOES happen. I'm trying to keep my mind on what I CAN change and do, and let the rest take care of itself. Maybe a bit Pollyanna-ish, but it's worked this far!
BTW, your questions are GREAT! Don't forget to write 'em down; and for your 5,003 other questions that inevitably pop up as you're driving home, come back to this site as often as need be, do searches, start new topics, and make some terrific new friends. You are truly welcome here and you'll find a wealth of info and experience.
Prayin' for you!
Gordon

Hi Lisa, I just posted my ordeal in this same forum. Best of luck in everything going forward. Seems like there are a lot of positive outcomes here on these forums, which only helps so much when it's you living it. your Leukoplakia is a similar condition to my Oral Lichen Planus, which is frustrating enough without compounding it with C!

Thank you Gordon, I like being a Pollyanna and find it is the only way to learn the lesson that this brings.
Best of Luck,
Lisa

Hi Flymama,

I read your post and you are the first person I've noticed so far that seems to have had a similar experience to me, as far as it starting with dental issues. I was just diagnosed and don't have my surgery until 1/23, so I really hope yours goes well and that you feel up to posting afterwards!

I have been very perplexed about the dental connection and no one so far can really explain it to me. Like you, I had a rough tooth that was causing some irritation on my left side of the tongue, near my back molar. Then, after the tooth was pulled, I thought it would get better. After being on antibiotics too long, I developed oral thrush, so I had a bit white spot there and pain all over the inside of my mouth. I had no tongue lesions or pain at all before my tooth cracked a bit and started rubbing against my tongue. After the thrush cleared, my oral surgeon advised me that the lesion and ongoing pain was NOT oral thrush - that cleared and then he did a tongue biopsy.

That was when he determined it was SCC. To this day, I still don't understand how a scrape from a rough tooth turned into cancer. If this lesion appeared out of nowhere, I would have understood and it would have made more sense. But, I still don't get how this cancerous lesion developed in the exact same place as where my tooth was rubbing my tongue - and it happened in like a two week period.

Sorry if I seem frustrated, it's just that no doctor has been able to explain the connection between the dental work and suddenly having cancer that same month. I just kept thinking it was an extreme coincidence until I read your post. So, you are not alone. If you ever get any answers or theories on how a rough tooth led to squamous cell carcinoma, I would love to hear about that.

Good luck with your surgery, and please keep posting here...it's been very helpful for me so I hope you remain on the boards. :-)

I've said this a few times and there are a few other people who've had similar situations (one had long term irritation from braces and discovered only post removal of the braces that she actually had scc). Mine was similar as it started out with a broken tooth irritating an area - I had built up a small callous under my tongue suppose to protect against the tooth - an oral surgeon removed it (the callous was biopsied and came back as thickened skin). After it seemed okay for a while as I had the tooth capped. Then long term the irritation began in earnest I had a biopsy but at the time my tongue had no sore - it was only irritated - however palpation of the area would have shown a small lump inside my tongue - I assumed this was scar tissue from where they'd removed the callous a few years previously. The ENT said nothing biopsy came back irritated and inflamed skin. I had the tooth filed, allergy tests etc.. No result. Jump ahead 2 years - i had the tooth beside the other capped and the situation became worse the ENT biopsied it - scc.
Some drs believe there is an association between long term irritation and scc - some don't. The truth is long term irritation causes cell change (this is what happens in the tissue of the lungs, and oral mucosa when exposed to chemicals from cigarette smoking - from which we often get cancer), so I think the same holds true for other types of irritation - whether it be mechanical or chemical. Take care.

Does anyone think being exposed to smoke from doing a wood burning stove could cause irritation in cells similar to cigarette smoking. My husband has fired a wood burning stove for over 30 years 2-3 times a day throughout our cold winters in MN. It not only heats our house but also a huge building next store so there is a lot of wood thrown in. (I know from times I have tried to help out but usually end up burning the ends of my hair.) If there is any chance it could of caused his rare cancer since he has never smoked or drank? I sure would hate to keep exposing him to an irritate.

Can second hand cigarette smoke cause cancer? I think the principle is similar.
No one can say for sure if breathing in the smoke from a wood burning stove long term can cause cancer - but if the wood you're burning has been related with pesticides etc... Then it's possible - it's also an irritant - period - is it super smokey? I don't even stand near open outdoor fires anymore - last Time I was someone's house and they got the fire going I spent maybe 2 hours breathing that stuff in and was sick for two days...
Smoke inhalation anyone?
Now I am sure there are many people who deal with stuff like that daily - and have no problem with it - but some people are sensitive to it - so it's an individual thing. My mom was a 3.5 pack a day smoker - she died of lung cancer over 10 years ago - at age 59. Her partner also smoked the same amount - he lived another 9 years - battled colon cancer and won but died from pneumonia - everyone is different.
Hugs.

It's multiple causes, and complex, but agree with Cheryld about constant irritation being a factor, and also the immune system breakdown to fight cell divison, heridary genes is being looked at, and 2nd hand smoke, as mentioned is suspect, nutrients, as well as certain vocations being exposed to carcinogens. I don't know if they really know what the cause of cancer is.