Well, I am a new member. "watched" what was diagnosed as oral lichen planus for about 5 years. Received dental exams and cleaning religiously every six months, annual "female exams" and health screenings. Even went to an ENT and had biopsy that only showed trama. Everyone just said to watch it because they don't know the cause and there is no cure. Well finally a dermatologist in our building offered to "work" with me. One look and she worked very hard to immediately get me into a "good" ENT surgeon. He immediately diagnosed tongue cancer and I am now scheduled to remove the growth and at least one lymph node on Wednesday, February 8th. Very nervous and have no idea of what to really expect because none of the tests results including the CT Scan and needle biospy of the lymph node have been provides. Only one side of my tongue. Non-smoker, avid exerciser 55-60 miles of walking per week since I was in my 20's and a very moderate drinker. One man and partner for my entire life. Mostly fruit and veggie smoothies for breakfast every morning. Lots od salads. Feeling very sorry for myself now. Well to not just rant, I will return with more info....probably following the surgery.

Hi, i'm sorry for that. I was also was diagnosed in the same situation as you. Healthy, one partner, etc. Already had surgery (2), selective neck dissection. Eating normaly but not speaking too well. Hope i can help you, feel free to ask!
Best wishes!

Brenda, welcome to OCF. Im glad you have found this site to help you thru your upcoming procedure. Try your very best to keep yourself busy so you dont worry so much. I know its very scary right now. Try your best to think positively.

Have you gone to a cancer center? If you need the links I will repost them for you. Its important to get a second opinion with a team approach where they are very experienced with dealing with oral cancer. Do you know what stage you are? Will you be having further treatments? Do you know how involved and how much tissue your surgeon will be taking?

Its a good idea to remember that every one is different and will respond in slightly their own way. Make sure you have a complete blood work up including thyroid, a hearing test and a good dental exam. If you will require further treatment down the road you will know what everything should be so if you have any problems with these areas you will have a guideline. Any questionable teeth should get pulled and if you will need radiation then you will need flouride trays made.

I know you must be overwhelmed right now. So much to do to prepare for this. Best wishes, please feel free to ask questions. We will help you with support and info.

Thank you so very much for the welcome and this site. Tongue cancer/oral cancer is so very rare and it is good to know many others have no idea of how the acquired this challenge.

I am being treated at a cancer center and the doctor has 27 years experience with great unsolicited reviews. No details yet. Ore-surgery details tomorrow Tuesday, February 7th and of course more info regarding the stage and extent after surgery. The doctor is so very good and calm but focused and targeted. After years of no action, he took one look and was on top of things to include immediate action.

I will be sure to update the posting with more info. The journey begins.

Thanks! I really appreciate your response. There is hope. Not easy but people do get through this. I will send more info and perhaps have questions after the detailed pre-op and operation itself. Right now, I am pretty much in shock.

Hi there and welcome - your story is my story right down to the letter (except I'm a veg head too.- I gather the tumor is small if they aren't reconstructing your tongue. Thats a plus. (i lost a 3rd and had it rebuilt with skin from my wrist - they did an amazing job!!! They should and will likely take out more than one node - the average is around 30 my dr was super careful and took out 40. It's not too bad a surgery - rads and Chemo if you should have them aren't easy but they are doable, and we're here to support you! Take care!

Hi Brenda, just wanted to wish you luck on your upcoming surgery. Sounds like you have a good surgeon and that's half the battle and makes all the difference in the world if you feel confident in the care you are receiving. I just had surgery a week ago yesterday and it went well. I'm sure yours will too. My suggestions are to make sure to take care of yourself during this time - get lots of rest, eat right, exercise, etc. (all the things you have already done)- basically anything but sit around and panic make sure you get a good support group - this (site) is a good start. And if you are anything like me... research, research and research some more. Knowledge is power. and last but not least - take lots of deep breaths (often!). hugs and prayers to you. Please keep us posted.

Ok! I am post surgery! February 8th was the date for my partial glossectomy. I survived that and awoke with a trach and feeding tube, reconstructed swollen tongue and ventilation machine along with several IVs. It is February 19th and a week ago, I was not sure I could make it. But alas! God is merciful. Dr. James Boyd performed the surgery with precesion. Reconstructed from the left firearm and then grafted from the left thigh to cover the forearm. I am now able to swallow liquids and pureed foods. Making lots of soups to blend. At home.

Stage IV a. No margins were detected. Present in one of 29 lympts nodes removed. CT Scan did not show spread outside area but more testing to come. Dr. appointment this Tuesday 2/21/12. Will know more to include follow on treatments. Although it sounds like radiation or chemotherapy per the doctor for added reduction of reoccurrence. Not sure what will be recommended.

Are there any new rediation or chemo options with minimum yet totally effective localized direct hits to the cancer sites?

I am so glad to read that your surgery is done and that you are home and able to take in food all be it liquid and pureed. That was me at much the same time frame.
I am not in a position to answer your questions and will leave that to others but just want to wish you well with your visit on Tuesday and any ongoing treatments.

Hi here so glad you got though it -it's a shock at first but eventually things get better. So glad you only had one lymph node ! That's a good thing. Likely it will be rads and chemo - straight up. They may offer you erbitux if tere was no ECE (extra capular extension) from the node. It apparently is more effective on non HPV related oral cancers than HPV related ones - though the side effects are unpleasant. (I've heard) depending on your tongue mobility I found semi solid foods like eggs are more manageable, than say mashed potatoes! Good luck and heal well!

Sounds like you are healing well Brenda! Keep up the good work!

Good luck on your surgery I am just recovering from mine.

HI welcome Dswavey!!!