Just found this website yesterday. Wish I'd found it a year ago.

I just finished up surgery #3 since February of 2002. The first was a partial glossectomy of the left tongue, as well as a partial neck dissection to pull some lymph nodes and check them out. Got a great lab report after that surgery. The surgeon even used the word "cured" and didn't recommend radiation at that time. Ha! Wish he had.

October brought a second surgery. Recurrence in the tongue. This time just a partial glossectomy in about the same place, plusa little more, of course. This time, also followed up with radiation. I requested a CT scan before surgery, which yielded some activity in the neck that the radiation oncologist decided to skip treating
(without telling me right away)

So, here I am after surgery #3 - a great big bilateral standard neck dissection. They removed both jugular veins, some muscle, other lymphs nodes, and as much tumor into the root area of the tongue as they could get to. So much swelling that they put in a trach tube for a few days so I could breath. Getting ready for concurrent chemo (1/wk) and radiation (1/day) to start pretty soon.

Do I blame the radiation oncologist. At least partially, although there were lots of hands on me during that time. I don;t think you canboil it down to one person, but I'm sure bitter as hell about it. Trying not to focus on it. Just makes me mad.

Was fretting over the PEG feeding tube, but thank God I found some not so scary info in here about that. I guess I'll let them put one in, thanks to you guys. I didn't use a PEG tube during radiation #1. It was hell and I'm told the chemo-rad combination will be worse, from an eating standpoint.

Getting sorta scared, you know? Anyone know someone to talk with around Pittsburgh? Others that have been through similar situations?
Any of you close to me?

jim-means@attbi.com

Welcome Jim,

I'm glad you found this site...I too didn't find it until after I was the passive patient for three surgeries (Radical neck, lymph nodes & teeth) and radiation. Since I have found this site I have become my own advocate and have learned so much about questions to ask and answers to expect. And when to go to the doctor.

Sorry I can't answer your questions, but I can tell you I am fighting right now with the spread of my cancer and truly know the bitter feelings you have. This is also a great place to vent. And when I throw things no one gets upset.

Please try and remember my favorite stolen phrase:
"Cancer is a word - not a sentence."

I'm sure someone will be along that can hopefully answer your questions.

Take care,
Dinah

Hi Jim, Welcome! (I'm so new here it dosn't seem like I have the authority to "welcome" But I mean it anyway!) Sounds like you have had plenty of fun for a year...I'm sorry. I'm not sure what else to add at this moment Except there are some great people here. Have you heard back from pathology yet on the nodes they removed? and how much radiation are you getting (number of treatments)

Welcome Jim,
This is a great site, and if we members haven't experienced something or don't know the answer, Brian probably does. I found this site shortly after finishing my chemo/radiation therapy , when I was at my lowest. I found no real support at M.D. Anderson, but I found plenty here.
Sounds like you have been through a lot. Keep us posted. By the way, a PEG is nothing. I have played golf, worked, and done just about everything else with mine. I am soon to get rid of it, but even now when I can eat quite a few things, it is still easier sometimes just to hook it up and get my nutrition in a relaxing way.

Good luck,
Danny G.