Hi,

My name is Nathan, I am 27 and recently became a part of the good fight my friends. Needless to say I have never felt so alone and scared in my entire life. I noticed a cold sore on my tongue about 2 months ago and tried treating myself with salt water and peroxide as I did when I was a child. This time it did not go away and only got bigger and a throbbing pain I cannot begin to describe.

As I visited a doctor he diagnosed it as an infection,gave me anti-biotics an sent me on my way, the problem got worse. The next visit he took a culture of the sore and diagnosed it as fungal then sent me on my way. About 5 days later I could barely eat and went in for a biopsy which came back positive as squamous cell. I have no health insurance and no one would touch me with a ten foot pole.

So I basically faked an injury to get into the county ER to have them CAT scan me as well as blood tests and x-ray. Finally after 14 hours a real doctor came in, took another biopsy and said from the look and feel she predicted me as a stage II. My mom has fallen a part as well as my fiance, now I am losing it and have no clue what awaits me. I have smoked and drank consistantly everyday for about 6 years now, I need guidance please before I lose this war. I have been sober 12 days and nicotine free for 9, my appointment for the consultation is tomorrow and I am scared of what they will say. Please, I just need someone Ican talk to, I feel shattered.

We are here. Feel free to vent, ask questions and share feelings. We have all been there and r emember those first "alone" days. First of all begin the process for Medicaid, with a diag. that should expediate the process. Others on here will respond and give you other recommendations regarding services when you have no Ins. Secondly, you will hopefully see from the many post, we are "survivors" and live good productive lives following treatment. Don't begin to think this is the end. There is good treatment available and you have to start thinking in terms of beating this! You have already begun the process by changing some of your habits, yea for you!

Nate,

I had tongue cancer I know how you feel and what your going through. I also went over the edge until I went to a Cancer Center. After my visit with them I calmed down, because I knew I was in good hands and they have the latest of the latest in techonolgy.

Seeing your in Texas contact M.D.Anderson Cancer Center that's where you want to go. Call and talk to them I'm sure they will help insured or not. I can't imagine anyone turning someone with cancer away.

Keep us posted. God Bless

Thank you so much Sharon, I swear I was having anxiety attacks that I was in a fake forum where no one would ever reply to me. I dont know what to expect tomorrow, my mom said the social worker had our goldcard going as planned and my appointment is tomorrow. I have no idea what to expect and need some calming down. I literally have to psyche myself out to eat anything, I am glad I found this site, a friend located it for me after he saw how fast my mental state was spiriling. I need you guys so bad right now!

You do not understand now how you guys are making me feel, I believe I just have calmed way way down in just a matter of seconds. M.D. Anderson basically laughed in our faces Connie, It was the most surreal thing I have ever been through. This is when we almost went " John Q " on the situation but instead I had my mother take me to ER where I told them I was fainting,had a fever, and cold chills. After all day we got in the system and am on my way to consultation tomorrow at L.B.J. Hospital. The doctor became hip to my jive why I came through ER and said she would make sure I was ok and that the " fever,cold sweats" was actually withdraws from not smoking cold turkey like I did. Crazy Right? Gosh I needed this, I am so glad i have found you guys!

Nate,

I was stage I - II.

I made it through treatment without to much trouble and am now didease free. I was diagnosed 1 year ago this week.

I am back to my normal life with a few minor adjustments.

Keep the faith my friend.

Thank you Kelly, Is there any way you could give me some advice? I mean, can you tell me your story, like how you found out and maybe what things you ate or drank? I am trying to keep weight on like they said and I am naturually a big guy at 6'4" 245lbs and now I am at 223 last time they checked. I need you guys so bad, The past 2-3 months have been ironic,scary and have experienced massive amount of deja vu'. I do not know what I am going into tomorrow or if this spread from my tongue to the lungs or nodes. Although I feel no soreness or pain in my neck, just earaches, tongue pain and headaches.

Hi Nate, Keep going in the direction you are going. Drink lots of shakes and add those protein powders from GNC ( Nutrition stores) to what ever your drinking. I would make chocolate ice cream shakes with ensure instead of milk and add the protein powder too boot!!!

This is a great site with a lot of knowledgeable people. Keep asking they will answer. M, myself and everyone else are here for your. You have come to the best source.

Thank you so much, I will literally live on this site for a long time to come! Please add me, I am open minded, raised by a single mother who taught me values and morals, so believe me I do not judge. I need all of your strength and would like to hear your stories as well as give you mine day to day. This is amazing...

Welcome to OCF. You are at the right place for help. I am so sorry that you have joined our forum but also so glad that you have found OCF. We will guide you along and listen when you vent. We will encourage you when you want to quit and cheer when you overcome hurdles. You have just found your new best friends here.

I know you are having trouble eating but right now try to eat everything you want. Big hamburgers, steaks, mexican, or chinese food, anything you are craving try to pack it in now. Depending upon what your treatment will be, your eating functions may become compromised. Swallowing and your salivia could give you some difficulty.

Your age will play a part in how quickly you bounce back from this. Being young will help you fight off fatigue if you are given radiation.

I have added a link for the best cancer centers. If you read some posts, there are some from members who did not have medical insurance and how they got treated. Do not let that limit you to where you will go. This is not something to play around with. You must be completely honest with your doctors so they can treat this.

The main pages of OCF have so much info, you could read for days. There is a search function there also. Read and learn everything you can. Ask questions of your medical team and take someone with you to all your doctor appointments. A second set of eyes and ears is invaluable. Write down your questions so you dont forget. Get a second opinion for how you will be treated and choose the best hospital and course of action for you.

Most of all, relax and know we are here to lean on. You are not alone. Best of luck with everything.

http://oralcancerfoundation.org/resources/index.htm#centers

Hey Nate glad you found this site! There are a lot of helpful people here. It will become your second home. I would be in a straight jacket without them.

As far as insurance the hospital social workers are extremly helpful(atleast ours were) with Medicaid. Once you recieve that I would go for a second opinion at MD Anderson which I believe is the top CCC for this cancer.

There is another young "survivor" on this forum named Bethers who has been extremly helpful to me and I am sure will post here shortly.
My sister had the same cancer as you, has recovered great from surgery and is now moving on to other treatment. Please keep us posted on your appointment and insurance and ask any questions that comes to mind. Someone here has gone through what you have. Also have someone with you for your appoinments to listen to the dr's because the first few appoinments for you will be like Charlie browns mom talking.
My thoughts and prayers go out to u and your family. =)

Hi Nate... welcome to the OCF. Sorry you are having to deal with this at such a young age. You will make many new friends here who are willing to share their lives and love.

It is wonderful that you were persistant and found a way to get yourself seen by an MD. Getting that biopsy only 2 months after noticing the problem certainly is in your favor.

As you make your way around the forum, you will find more stories than you can read but I do want to share briefly with you.

My aunt (more like a sister) is 67 years old. She had stage II SCC on the tongue. The dentist screwed around with her for several months diagnosing lichen planus and tongue biting. Finally she saw another doctor who did a biopsy. She had about 1/3 of her tongue and several lymph nodes in her neck removed in Feb. They also made a tongue flap "patch" to reform her tongue made from a muscle in her chest. She came through the surgery beautifully, never requiring a feeding tube or trach. She was in the hospital less than a week.

The pathology results came about a week later and showed perineural invasion (invaded the nerve) but no cancer in lymph nodes. If there had not been perineural invasion surgery would have been the only treatment, but since it had gotten to the nerve they recommended radiation which she completed in May.

You are young and obviously proactive. The new friends here will help you get through whatever treatments are recommended for you.

I do have one suggestion... have your mom and finacee look at this site as well. It has absolutely meant the world to me and enabled me to know what was "normal" and helped me to give my aunt encouragement and support.

We are with you, hon.

D

Well,I absolutely got no sleep last night and am getting ready for yet anotherlong day at the hospital. I never expected to support I have already recieved here, I am open to any opinion or recomendation. I have taken my mom with me to every appointment because I am still trying to understand. I will be on here after my meeting and let you guys know what they say. I was also told that a lot of doctors from MD Anderson practice at L.B.J. as well, Is there any questions that maybe I should write down and give to my mom to ask? If so, let me know, I am about 2 hours shy of my date with the doc's. Love ya'll and thank you again for being real, an being here for me.

Here is an important link. I will give you so much info and help in what to ask (page 4). It was written by OCF members...

http://www.oralcancerfoundation.org/board_images/GTI_draft.pdf

Hi Nate and welcome. Sorry you have to be here BUT you found a great source for support and information. As a caregiver I highly recommend you get your mom to join so she can ask questions and get support when you just aren't up to it. Like others have said, try to pack on the lbs. now. Congrats on being proactive on getting this diagnosed and moving on with treatments. As you will find out by reading other people's posts, it is not uncommon for this type of cancer to be misdiagnosed. You are lucky that you didn't delay seeking help. MD Anderson is supposed to be tops in the country for this type of cancer. I would give them another call and see what you can do about getting in there. Good luck with your appointment today and also A BIG CONGRATULATIONS on stopping drinking and smoking. It is not easy. Talk to your doctor about getting something to help with the side affects of withdrawing from both the alcohol and tobacco if you need something. Keep posting any and all questions. Someone on here will give you advise and encouragement.

Nate! Hope all went OK today at your appointments. I had tongue cncaer too. Diagnosed at 33. I had teh earaches and headaches and sore otngue too. Got diagnosed late. I'm stlll here. I eat most everything I like- very carefully and with small bites. My speech is impaired but gets better everyday.

My thoughts are with you and I hope you make a full and pseedy recovery adn get the treatment you need ASAP.

Big hug from California. We're pulling for you here! KATE

Hi Nate,
I was lucky to join this forum a few weeks ago because my dad has your diagnosis too. His surgery was today. I felt much more calmed after finding information about all this. You will too! This is hard but be positive! My dad didn't have insurance either but major hospitals have programs for uninsured people. We spent most of the past 2 weeks in the hospital looking for information, calling, visiting office from office. If you can go in person to apply for any of the assistance programs or state programs. If they give you any number call it right away. Don't hesitate to ask anything. You can look for this info in the hospital's website to have an idea of what papers you will need. Organize them very well so you can save time later. Print maybe 2 copies of everything and carry them with you in case you need to leave a copy in any office. If they ask you for additional papers bring them right away. Ask everyone everything. Ask, ask, ask, and then do what they ask you to do, bring whatever you need to bring right away. It helped in our case. It is all I know for now but I hope this helps you. I wish you the best.
Benfry

Hi Nate!! Welcome to OCF!

Please look into MD Anderson or another CCC, I would get another opinion or two to compare treatment plans. I had 3 and I worked as an Onoclogy Nurse and still choose MDA over drs I worked with due to the fact that MDA sees patients like us everyday rather than a few cases every so often.

I hope your appt went well today, keep us posted!

Hi, Nate -

I'm sorry you have to be here, but this site has saved the sanity of most, if not all of us. Whatever you will be facing, someone has gone through something similar and will be more than happy to share their experiences and give you real, practical advice.

Good luck with your visits. We are all rooting for you.

Marlene

Hello Nate

I guess theres nothing I could really say that you havent heard already. Remember that even though they are falling apart your mom and fiance are there for you so reach out and those around you will reach back youll see Remember to talk to someone weather on here or in your day to day life Dont let anything fester kay? If you ever need to talk just to talk or whatever we are here for you.

Nate, take a deep breath and let it out slowly. You've got a problem but you're getting help and good advice. Your doctors will get you through this.

We've all sat there and heard the diagnosis of cancer so we all know exactly how you're feeling - alone, terrified, thinking that your life is over. But it's not, I guarantee it.

Read Christine's post again - she's a veteran warrior here and although I don't know her personally I know she's a great resource.

Keep us all posted. Read everything you can. We're here to help.

David 2

Thanks for recommeding me, David. That was very kind of you. I have had the pleasure of meeting many OCF members in person at the OC walks. Im trying to ease the mind of so many new, scared members. Hope they learn to relax a little and understand that this battle can be won, we are all living proof!

Nathan,
I drank and smoked for a lot of years. I got sober 8 years ago but my cancer was not caused by my years of hard living. You can beat this disease. Hang on to your sobriety. Feel free to contact me directly if you would like to discuss.