Hello my name is Marie, am 48 and was diagnosed with tongue cancer 2 weeks ago. Everything has gone so fast since then that I don't know what stage I had. The doctor is optimistic but says that I will be closely monitored because there are no guarantees. Although I had been followed for 10 months for sores on my tongues, 3 doctors mistakingly diagnosed it until 2 weeks ago. All of this with them knowing that my father died 3 years ago of the same oral cancer.

Already had a partial glossectomy and am at home recovering. Although they said I would have a lot of pain, nothing major until yesterday and today where I feel I could just die - my teeth, ear, mouth. I am having enormous difficulty in taking anything in ... liquids touch the sore than everything hurts so very bad.

I hope anyone with similar experience can comment. I am really scared at this point.


thank you

Hi Marie,

Welcome to the forum. I'm very sorry you have joined our ranks, but glad you found us. I'm sure you will find a lot of good info and help here. It would be helpful if you could give us a few more details. You said you were just diagnosed 2 weeks ago. You must have had the glossectomy almost right away if you are home already. Was there any other surgery performed at the same time, neck dissection? free flap? Did you have a nasal feeding tube or tracheotomy?

In the meantime, I would suggest getting some "magic mouthwash". It is a concoction the pharmacist can make up that numbs your mouth, so you can eat with less pain. Also, you need to tell the dr. you are having so much pain. He should give you a prescription for a stronger pain med. And don't let them feed you a line about pain meds being addictive. Yes, they can be very addictive, but they are necessary if you are to have any relief. The possible addiction can be dealt with later. The RAD oncolgist was reluctant to give my daughter stronger meds and she suffered quite a lot because of it.

I'm sure some other people will respond to your questions. Hang in there. It will get better.
Take care,
Rosie

Thank you Rosie for such a quick response. Everything was done quite fast. I had a partial glossectomy done (both sides of tongue)with no trach, no neck dissection either. Doctor also did somethign with base and side of mouth (probably why teeth hurt) which I have not been able to ask him about. Only 3 days in hospital but started hemoraghing --- dr. saw me and said everything was fine, this could happen.

I am happy to have found this site. Although I had been followed for 10 months for mouth sores, no one until 2 weeks ago did anything right. Just a comedy of errors. But from then on I have not had time to ask many questions. My father had it at base of tongue stage 3 - they removed all salivary glands removed, 1/2 of tongue, track , extensive radiation, radium implants, the whole thing. Unfortunately he lasted 11 months only. Needless to say I was ecstatic to learn mine was not as exetnsive and think I have been in a bit of a daze since then kind of minimizing the whole thing. On visiting your site, I realize that I am in for a battle.