I am a 53 year old female who received DX of SCC of tongue in late February, 2009. Had been complaining since July, 2008 of teeth pain and ear pain. Had a lesion on the back part of tongue. I had a history of canker sores since childhood so did not think anything of it. Threee trips to the dentist could not find problem with teeth. Two visits to Doctor's office and treated me for sinus infection. Finally saw oral surgeon in February and got my DX. I was devastated. I was a light smoker for 30 years and a casual drinker of alcohol. PET scan showed cancer in mouth and possibly the lymph nodes in neck. Had 2/3 tongue removed end of March and right neck resection. 31 nodes removed. Surgeons were sure the swollen nodes were cancer but were not. Had a PEG tube inserted 20 days following surgery as I could not eat or drink enough to sustain me. I had 2-3 wound infections with the PEG. Worst pain and sickest I have been ever. Did not have any tissue added to build up my tongue. Radiation/Oncology determined no radiation or chemotherapy. Started speech therapy 2nd week of June. I am doing well. Had a barium swallow on 6/17/09 passed with flying colors. Tube removed 6/24/09. I am now eating again. I have had cheeseburgers, steak cut up in small pieces, tacos, etc. Food never tasted so good. It takes a while to eat but I don't care. I am a walking, talking, eating miracle! I still have discomfort in my neck and still working on my lip which slightly drooped but is going back to normal and too much saliva! I just wanted to uplift someone today because for the 1st 2 months I didn't think I could go on. But I did and you can too! Would love to talk to someone!!!

Connie welcome to the forum. SO glad you are doing so well. Glad there was no cancer in your lymph nodes. I went through the same thing you did with Drs. It was my ENT who finally did something about it after the ear pain showed up. Just glad I did not listen to all the other Drs who said it was just an ulcer.

Hey give some of that excess saliva to those of us in need. lol

Congrats and lets hope this will be the end of your cancer story.

Welcome aboard and hope all goes well. Keep up the good fight . I grew up in the Rangeley Lakes region of Maine. I am currntly 18 months free of this enemy. Good Luck Semper-Fi Bob

You're an inspiration, Connie!
Congratulations & good luck!


Marlene

Thanks for the good words! I think the most difficult thing is talking on the phone. My job requires a lot of people contact. People hang up on me when I answer the phone because they don't understand me. I have a lot of trouble with d's, c's, g's, etc. I do better talking face to face. I can truly relate to those who have speech impediments now as I am one of them. But I am a survivor and I will keep at it day by day.

Connie,

Yes, it will take awhile but soon you will master those certain words. Try saying that Word..(CERTAIN) I could not for the longest time. I still have some problems off and on if I try talking to fast.

Just know that each day, week and month will bring some small improvement..

Take care... Diane

connie

My oncological dentist/ prothodontist just made me a palate drop to help with my Gs and Ks and speech in general. It is similar to a retainer but since my reconstructed tongue does not touch the palate in the back, this fills in the gap. Plus I took speech therapy right after the operation,
Congratulations on being able to eat again, I am still stuck on the PEG as the second round of radiation really fried my epiglottis. At least I have not had any PEG infections but I slather it everyday with antibiotic cream.
people do have a very hard time understanding me on the phone also and it is difficult to have this speech impediment.

Welcome to this club that nobody wanted to join.
charm

Connie, welcome to OCF. Im sure your experinces will be of great help to others just beginning. You are so lucky to be eating so well after everything you have been thru. Speech takes lots of practice. Keep up the good work

Hi Connie, glad to hear you are on the road to recovery. My husband's BOT cancer wasn't picked up either, had symptoms of sore throat and ear pain for over a year, saw internist, dentist, oral surgeon and 2 ENTs.
My husband's speech has been affected too, he has speech therapy which has helped tremendously and has a tape cassette with words he is supposed to practice saying every day. Gets a new list every few weeks. He is very self conscious and is in court alot and does public speaking. I don't really notice it that much except he has a wet lisp. Lots of saliva still. If he is tired or dry his speech sounds worse, he is intelligible though. He doesn't like talking on the phone either but recently he has begun telling people up front that he had surgery on his tongue for cancer and might sound funny.
Is your taste back? His is only slightly. He is eating great and swallowing is not a problem anymore. It's amazing how the body recovers after a few months.
best of luck
Nancy