I'm new to this site. About 8 years ago i had a canker sore on the side of my tongue that would go away and then come back every few months. I had it biopsied and it came back as mild dysplasia. I'm an non smoker, don't dip, don't drink. I had about 7 other biopsies over the next 8 years all of which came back as mild dysplasia. It was scary, but it wasn't cancer and i felt that we were on top of it. The oral surgeon i was seeing referred me to a tongue cancers specialist about 5 months ago because he thought he would serve me better. He has done 2 biopsies, first of which came back as dysplasia and then in July 2013 came back with a small area of cancer. I was staged as Stage 1.

The plan was for the surgeon to go in again (yesterday) and get the remaining cancer and clear margins. However, when he went in he saw a lession at the base of my tongue. He took 3 small biopsies of that area in the OR all of which came back as cancer. He woke me up from surgery to discuss the next step as removal of this lession would require a more extensive surgery than was planned. I'm scheduled for this Thur for him to go back in and remove that area. The surguery will require that he cut my jawbone, remove about 1/3 of the base of my tongue, and reconstruct with some tissue from my arm. He will also remove the lymph nodes in my neck to ensure they are clear. I'm told i will be in the ICU for 3 days with a trac and then in the hospital for about 2 weeks recovering. I'm know thats what needs to be done, but i'm scared of what is in store. Can anyone who has gone thru this give me some idea of what i can expect? I know i can do it and get thru it, but i'm extremely anxious about the surgery.

Hi yes a few of us have gone through the same thing - I managed to avoid the split jaw -I told my dr not to do it because it was easy - if he had to to get all the cancer then that was fine but if he could get it all without splitting my jaw then I would prefer it - he did - is this cancer under your tongue? If so its oral tongue cancer not base of tongue. Your tongue base is down your throat. Your treatment sounds like its oral tongue - and similar to mine.the surgery sounds daunting and I won't lie it is but the recovery isn't too bad. The drains are a bit uncomfortable for the day or two they're in - and you should bring an ipad or notepad because the trache will keep you from talking for a day or two as well. Pain wise it wasn't too bad for me mostly I was numb for the neck dissection and swelling. You'll get through it. good luck

I had similar surgery to what is being proposed for you except that my flap came from my chest muscle instead of my arm. I had 6 teeth and part of jaw bone removed along with all the lymph nodes. The trach was the most difficult for me. You will not be able to talk. Because my father had similar surgery I knew what to expect. I made up a one page sheet of paper with most of the words I might like to say in different colors and different sizes in boxes. I then had it laminated and took it into surgery with me when I woke up I had a way to communicate. I would just point to the word. For example if I was in pain I would point to the word pain and on scale of 1 to 10 point to the number. If I was cold point to cold, etc. It was so helpful that the ICU nurse asked for a copy of it. Pain management is very important as this surgery is no fun at all. That type of surgery takes a long time to complete so you are likely to have fluid accumulate in your lungs while on the table so long. It might be difficult for you to cough that up through the trach so they will sometimes use a suction tube to help you remove that liquid. It is also no fun but you will be able to breath better afterward. If the cancer is truely in the base of your tongue that is the part of your tongue that does not move, then there are other treatments to consider such as Brachytherapy. I have had that as well because I had a reoccurrance in the base of my tongue 19 years after the type of surgery you are having now. I agree with Cheryld it is no fun but you will get through it. This cancer is tenacious stuff so they have to take large margins to get it all. Just hope that they do in your case. Best of luck my friend.

Thank you both for the information and suggestions. Were you pretty aware of what was going on when you were in the ICU or were you pretty out of it? Is the trache painful or uncomfortable or is it just that its difficult to get used to? Do you feel like you can't breathe or is that not the issue?

I would ask about TORS (transoral robotic surgery). Depending on the extent of the tumor and involved structures, you could be a candidate for this much less invasive surgery method.

Base of tongue tumors are often HPV+, but they do not usually present in the oral tongue. I would still ask to have the biopsy tested for HPV.

Are you being treated at a large cancer center that sees many patients per year?

I would try to get a 2nd opinion as well. I saw doctors at 4 cancer centers in a 1 week time frame before deciding on a treatment plan.

Hi again. I was in icu for all of 12 hours. And I was aware. I was operated on at 7am and finally brought into icu at 1 am that night/next morning. I was in surgery for about 14 hours then recovery for a few. Then the cruel creatures in icu got me up into a chair at 7am the next morning and that's where I sat until about 6pm when they made me walk to my new room on the regular floor (I'm being somewhat facetious because I know full well that getting up as soon as possible - is important - I used to be a nurse) but I had a bandage on my leg (donor skin to wrist), another covering my graft site on my wrist, an IV in my foot, a trache, ng tube for feeding and 2 drains. (Frankly I looked like the bride of Frankenstein) and they made me walk.... but whatever - every hospital is different - some people are in icu for a few days.

let me first say I have a high pain tolerance, they had me on morphine and I was well aware just sleepy. So I'd sit there eyes closed and listen to the stupidity going on around me - and it was stupid - the nurse chatter I mean - okay let me rephrase that the nurse in charge of the icu - 1 nurse 4 beds - was stupid - long story tha involved the catheter I forgot to mention I also had. Anyway - the trache is uncomfortable - and because you breath through that for a day or two it's just not pleasant. Plus because of the trauma to your mouth etc, you drool a lot, so they suction you through the trache which in my opinion is the absolute worst part! I'm pretty sure they hit my lungs on numerous occasions.

By day two post op they removed it and put in a fenestrated trache which allowed me to breath and talk and from that time on I was flying fine. Again - I have a high pain tolerance so on day two I told them I was in no pain and told them to remove the IV and pain meds and catheter! Mostly I was swollen scary looking and numb. I wasn't really in pain, and was able to shower - wrap my bandaging and suction myself. Again. I'm not average I don't think, I heal fairly quickly drains came out day four and the second trache came out day three (it was in for 24 hours) staples (somewhat painful... one was in a nerve and when the nurse removed it it was a big ouch! ) came out day nine - I went home day 10 - (eating okay)

As bad as it sounds it wasn't too bad... Radiation was worse but in a different way. You know your pain tolerance, bottom line - you shouldn't be in pain

You'll be okay.

My story is similar to Cheryl's. Trach was the worst part. I was in ICU about 3 days and was completely aware of everything. They made me walk around too. I remember the pain not being too bad, I just really really wanted the Trach gone and to be home. I think the worst pain was when one of the interns pulled out a drain in my neck without removing the stitches. I almost passed out and nearly stopped breathing. All in all I was in 7 days. It sucked but now it feels almost like a dream, like it happened to someone else. You can def do it! I'm over two years out from surgery and don't regret a minute.

I wish I'd seen this earlier, mate, but it is what it is.

I strongly advise anyone facing some unknown surgery or other potentially serious medical procedure NOT to ask about whether it was painful, or how painful it was, comparatively or absolutely. DO NOT ASK such questions.

Why?

Because there is no possible benefit from asking, and for a number of reasons.

1. As Cheryld mentioned above, we all have different perceptions of pain; of how painful something is or how uncomfortable it might be. IF you ask someone who has a lower pain tolerance than you, you will aggravate/exagerate the fear. The pain you actually feel will be less, but it will bother you more. IF the event is in 5 days, you will have increasing anxiety each day, rather than calm and peaceful days for that time.

2. The fear of anything unknown is always worse than the actual event. Write that down, it WILL be on the exam.

3. When the event arrives and you have avoided dwelling on it prior to the event, it will be no more painful that it would otherwise; but the converse is not true.

If you have asked, you will be dwelling on it, and it will be much worse simply because you will have programmed yourself to believe that it's going to be horrible. That's just the way the untrained mind works.

And here's the best thing about pain (There's a good thing about pain? Why didn't I get that memo...?) is that it's usually over and done with before you are out of the hospital.

NO, wait, that's just ONE good thing about pain. The BEST thing is that you cannot remember the actual pain, you simply cannot recreate it in your mind, the closest you can come to remembering it is to remember that you HAD pain, but you can't remember the actual pain, no matter how hard you try.

Like Cheryld, I have a very high tolerance of pain myself, but that's another of the unsung beauties of pain; the more you actually experience, the more tolerant of it you are (the less "painful" the actual experience of it is.)

And in closing, (to the deafening cheers of the audience at the happy prospect) be advised that there is one thing worse than asking about pain, and that is allowing yourself to be overcome with the "Woe is me"s.

If you simply advise yourself that the procedure "is what it is," and what it is, is saving your life; you will sail through and wonder after what the fuss was all about.

But if you start feeling sorry for yourself because you are in some (transitory) discomfort, you will be condemning yourself to additional suffering when the pain and discomfort passes, but you've been so busy singing "woe is me" that you didn't notice that your body no longer is hurting so bad.

Good luck!

Ask for a possey muir valve trach so you can easily talk with it. Best wishes!

Thanks again for the replies and the support. Very helpful information and viewpoints. Cheryl and Cherri thank you for your detailed responses. They both have helped with my anxiety level. While Bart brought up some good points, for me getting some real life examples is helpful. I do feel that "it is what it is" is the only way to view what needs to occur and am prepared to get thru it. Thank again to all!