I was recently diagnosed with cancer on my tongue. I have had an oral surgeon watching this for almost 10 years. I have had many biopsies over this time and this time I was not so lucky. I have never smoked, chewed or drank so it is kind of a mystery why I have this. I have now been to a second dr, a ear nose and throat surgeon who came highly recommended for this problem. Of course I am pretty shook up about surgery to remove part of my tongue, but I feel the cancerous tissue must be removed so I can do my best to get rid of this. I guess I am just looking for people who have been or are now going through this kind of surgery. They are going to remove the lymph nodes in that side of my neck also. The CT didn't show any other problems, so hopefully they can control it from spreading. Radiation is about a 50% chance they say, depending on how the lymph nodes come out. Hope you all can share your experiences. Thanks

Dear Bigtwin-being pretty shook up is pretty normal! But there are lots of folks here who have been through the surgery you are going to have, and they will try to answer any questions you have. There is also a ton of information on this site. If you will find the search button under the Banner at the top of this page, you can search a word, term, phrase [tongue surgery] etc. Please tell us more about what is going on with you. Where are you having the surgery done? Amy

Dear Bigtwin,

I have sent you a private email with my cell phone number. Please check and give me a call as I can answer many of your questions as I have been through exactly what you face.

Jerry

Bigtwin, Your post was exactly one year to the day, that my husband Erik was diagnosed with tongue cancer. I know exactly the feeling your having right now, that shook up feeling, Christmas coming and trying to get things in order before hand. Erik had about 40% of his tongue removed and all the lymph glands in his neck. He did have to have Chemo and 35 radiation treatments, (he had one positive node). The only real advice I can give is, STOP, Take some deep breaths and begin taking one thing at a time. Im sure you have been exploring this sight, it has THE BEST RESOURCES available (outside the docs) Not to mention the support. If you have a wife have her get on here and keep checking things out, there are tips of the trade for getting through everything.
Its going to be a ride, but its one that I cant say was all bad.
Know we are all here for you!
Jennie

BT,

We need more info to be as helpful as possible. There are many decisions you will be asked to make and it will be very helpful to arm yourself with as much info as possible. Who do you see next and what is the purpose of that meeting? Answer that and we will give you a ton of info and questions to ask.

There is much more to be said but lets concentrate on the next Dr visit.

I thank you all for your posts. It helps to hear that other people have gone through all this and know how I feel. I am scheduled for surgery the day after Christmas,,, Ho Ho Ho. I believe they called it squamous cell carcinoma. As I said, they will remove as much of the tongue as necessary and remove the lymph nodes and send them off. I will feel much better when they say they are clear. If not, then the dr says I will have to have radiation. He wants me to concentrate on the surgery and not worry about radiation for now. We'll cross that bridge if it comes. I have heard that most people have to have their teeth pulled before radiation? Was that the case for most of you? Sure hate to think of that. But if necessary I'll just have to do it. I am trying to think postive and I have faced many surgeries in the past, spleen removal, gallbladder removal, carpel tunnel on both hands and knee reconstruction and total knee replacement due to an accident when I was a teenager.... Gee, sounds like I could write a book. Really I lead a very active life on our farm and I believe I will get through this too, just dread it. But then who looks forward to any surgery? I would like any advice from you folks who went through this surgery so I will know what to expect after surgery. Can you talk and swallow right if they remove quite a bit of the tongue etc... Thanks again.

Hi, I had the surgery about a year ago, and got clean margins. Just last month at my regular checkup, we found a new "spot" and I have now had the pleasure of tongue surgery twice. I won't go into details here, but I have discussed my surgery and recovery time in the "blog" section of the forum, under the "Dear Diary" blog. I have had a total of 1/3 of my tongue removed (left side), I opted to have my teeth pulled, the dentures went in as soon as the last suture was put into place. Actually, getting used to eating and finding the right denture adhesive has been the most frustrating part of the whole experience! I had a great surgeon (same one both times) and had some pudding and apple juice after I came out of recovery the second time (that was pretty gutsy of them...it's a wonder they didn't wear some of the pudding home with them that day!)
Understand, the second surgery was done outpatient. The first surgery, a year ago, was a modified neck dissection, hemiglossectomey (tongue surgery), I was intubated for two days, feeding tube placed, the whole shebang. To my great surprise, I was eating within a day or two, and talking coherently (?) the day after I was extubated. I didn't have chemo/radiation to follow up, and in light of the second surgery, I am probably not the one to ask for advice in that respect.Some folks do well without adjunctive therapy after surgery, I am just not one of those lucky few. Will go in on the 23rd for a PET scan, and then on the 27th to talk about radiation after that.
Hang in there, keep us posted
Andrea

BT,

I did not have surgery but did have Rad and Chemo. My docs said surgery was not necessary since the rad and chemo would kill the cancer and if I needed surgery after it still would be available. So far so good. I am not saying surgery is not right for you but there may be options for you that you are not aware of. I went to 5 cancer docs before I decided and believe me their recommendations were different.

Although I had surgery it was to remove my lower jaw and rebuild it, not to remove a portion of my tongue. I also had radiation.

My medical team recommended a " belt and suspenders" approach. One (surgery) was good, both (surgery and radation) more insurance. I agree...I don't want to leave anything to chance and I have no intention of spending the next who knows how long, worrying about whether or not they got every little bit of the demon. I KNOW that I and they have done everything they could possibly have done to give me the comfort of knowing the cancer is gone.

What's in the future is just as much a mystery now as it's ever been...I'm good with that. Cancer or a recurance doesn't play any bigger a role in my future than it did before.

Maybe my beliefs are foolhardy...I don't know, but they're mine and I'm sticking with them. I just have way too much life to live, and I refuse to do it under the cloud of "maybe I should have agreed to..." this treatment or that.

It's over and there's a lot to do with the rest of my days.
All of the best!
Wayne

We can second what David told you.
It is really important to get a second opinion.
We were led to believe that the numbers for survival were about the same without the surgery.
As you can see in this instance...things are going really well for us.
Whatever you decide...we wish you the best.
Take care
Marica