hey there, another new guy

Agatha said:

Hi Jason
Hi Jason,

Wow, you are the first person my age I have met who was diagnosed with tongue cancer. I am not saying that in a happy way, so please don't take it that way.
I was diagnosed with tongue cancer as well in October 2010. (non-smoker, non-drinker, HPV negative). Had surgery November 1, 2010, a skin graft taken from my left arm and 2 of 37 lymph nodes were positive. Margins were clear, and they believe it has not spread elsewhere. I am currently going through radiation and I am terrified about its side effects. I decided not to do chemo because they were confident that radiation would be enough since they got all the tumour out and only 2 of 37 lymph nodes were involved.

If you don't mind me asking, how many radiation sessions did you do? What effects are you experiencing? How is your speech?
Thanks so much for posting. It would be good to hear a perspective from someone my age.

Agatha

Great to meet anther survivor
Agatha,

Wow, I'm so sorry to hear about your story. It's amazing that our cases are so similar. No smoking and very minimal drinking on my part as well. I was diagnosed when I was 26 as well. Same thing with the canker sore type thing on my tongue that I just went along with until it became unbearable. I had 2 surgeries, the first one was rather minor where they removed a small (dime size) piece of my tongue. things looked like they would be just fine because I was able to eat and speak just fine after about a week post-op. But then I got the call from my surgeon saying the margins were positive and would have to go back in for a second surgery to remove more tissue and also do the free flap graft. All in all, I lost about 20% of my tongue, so not quite as severe as your case. All that to say, after my surgeries were complete and I was well enough to start, I did 30 sessions of rads over 6 weeks accompanied by Cisplatin once a week for the 6 weeks. I see you've already started your rads so you're undoubtedly getting more uncomfortable every day. I was on a peg tube (which I'm sure you are as well) for the duration of my treatments and then about 6 weeks afterwards as my mouth and throat healed up. I was completely unable to intake any solid food after about 2 weeks into the treatment which is why I was on the peg tube as well as liquid pain meds. The pain was constant and fairly severe from about week 2 through the end. it's hard for me to comment on nausea you may be feeling as I was on chemo at the same time, so I would associate most of my upset stomach on that. I can't dress it up and make it sound better than it was because I know you would find out the truth on your own. BUT...I did begin feeling better a few days after my last session and things just constantly got better as the days went by. In fact, I went back to work full time as a fire fighter just a few weeks after my treatments were finished. As far as speech goes, I didn't do any speech therapy post-op (kind of wish that I had) but with time my speech went from barely comprehendible to quite good minus a few letters I have trouble pronouncing simply because my tongue is unable to move the correct way. I hope that you're seeing a speech therapist, because since your operation was even more invasive than mine, I would figure that you would have a little tougher time getting back into the swing of things. Also, I would suggest if your surgeon hasn't prescribed you physical therapy to help with mobility with your neck and shoulder you ask him/her to. I did have any prescribed after my surgery and have just recently had issues with my shoulder that I had to seek physical therapy for. Anyways, I hope this answers some of your questions and gives you a little idea of what to look forward to (I guess "look forward to" doesn't really sound right). I'd love to keep in touch so you have someone to talk to about your specific issues. my email is jasonmcnamee@gmail.com so please feel free to keep in touch and let me know how things are going with your treatment and how you're doing.

Jason

Agatha said:

Thanks for Sharing
Jason,
Thanks for sharing your experience. I'm sorry to hear about your story as well, it's tough. To be honest, I think my cancer was caused by a tooth that kept aggravating my tongue. I will never know I guess, but it still gets me sometimes to think that a tooth has changed my life forever. I think the worst thing is to think why and what if, so I try my best not to, but it's tough. This type of cancer, not that other types aren't bad, leaves so many scars. My arm, will never be the same and I feel I can never wear short sleeves again. They had to take quite a bit from it and because they said my arms were a lot smaller than average, it has left pretty bad scars. I know I shouldn't worry about that, but if I make it through this all and it doesn't come back, they said they can do more work on my arm to make it look a bit more nicer. My speech, though people can understand me, is very frustrating for me because it just doesn't sound like me. I just started my career as a teacher and I really hope to go back. And then my neck, the incision isn't too bad, but with radiation, I am definitely having the neck stiffness.
I am doing 30 sessions as well. It is uncomfortable. The lack of saliva is big problem, and the redness around my neck and just in general, pain in the mouth and neck area. The mouth sores have gone down a great deal since I have had a break between sessions because of the holidays. I also have a g tube. I am still able to eat food at this point, though I need to drink a lot with the food. I have had this tube in for 2 months already and although I should like that it's there just in case, I can't wait until it comes out.
I'm glad to hear you are feeling better. I am seeing a speech pathologist and she gave me exercises. But I feel pretty frustrated with a lot of them because they are hard for me to do. I mean, I can, and will never, be able to stick my tongue out or move my tongue in certain ways for certain words and letters - much like what you are experiencing. They are happy with my progress though, because they said that while on the operating table they were really worried that I would never be able to speak again. A very scary thought, so I should be grateful for what I have.
Sorry if I rambled on, but yes, I would also love to keep in touch so that once I am done too we can both discuss how we get through some of the obstacles we face. Thanks for your e-mail and talk to you soon.

Agatha

Agatha, please send me an
Agatha, please send me an email because I would like to provide some other resources that I think you'll be interested in. talk to ya soon. also, if you have facebook, look me up...www.facebook.com/jasongmcnamee.