What is recovery like after tongue cancer surgery and treatment?

Recovery from tongue surgery can vary significantly depending on the extent of the procedure, but many community members have shared that having a clear understanding of what to expect helps with the emotional preparation. The medical team will walk through all the specifics about reconstruction options, feeding tubes if needed, and the timeline for any additional treatments, as each situation is unique. This waiting period is incredibly challenging, especially with visible changes happening, and it's completely understandable to feel anxious about processing what lies ahead - many others in this community have found strength in sharing their experiences and supporting each other through similar journeys.

I see you posted this in May, so I hope you got your surgery and beginning to heal. I had a partial glossectomy and reconstruction 14 months ago. It’s interesting that tongues actually grow (heal). The first one I had removed was just at the oral dental surgeon. He cut it out and left it. About 15 years later, as soon as I first saw the tiny lesion, I knew what it was. I had 2/3 of the bottom of the left side of my tongue removed. He reconstructed using tissue from the bottom of my mouth. I had stitches from the top of my tongue to almost my throat. I don’t think there is anything anybody could tell you that would make a huge difference in what you should expect but I sure do wish somebody had told me basically anything. All our experiences are different. The one thing I can say for sure is that the good days do start outnumbering the bad ones. My biggest struggle right now is food. Nothing tastes the same. Many things just taste like salt and chemicals. I still can’t chew on that side of my mouth because it doesn’t really work right. Textures are really weird and I have to force myself through the first few bites of everything. But I’m still here. I’m still spending time with my grandkids. That’s much better than the alternative. Hang in there.

You will definitely need a feeding tube..DO NOT DO THE NG TUBE. Request No Demand a peg tube..It's going to take a few Months to get used to the flap..yes they usually take the graph from your arm But you CAN Request that they take it from the upper portion of your thigh I won't Candy Coat this..It's going to be a major challenge

I have learned that reconstruction and aftercare are very different in each person. I was not prepared for any of it. Mine was stage 1-2 so I thought it was going to be a breeze. I thought they would cut out a little piece of my tongue and pull some tissue from another part of my tongue up over it, stitch it up and wham. And even though my surgeon says he never said I could go back to normal activities after a day or two….. he did. My husband heard him say that too. So imagine my surprise when I came out of surgery with 2/3 of the underneath of one side of my tongue cut out. Stitches from the very back of my tongue to the tip on one whole side. I tried to go back to work after a few days and came home sobbing. I ended up taking a full 2 weeks off and then suffering through. When I went to the checkup, I told the PA that I must really be a wimp because I didn’t know how people are back to normal after a few days. She was very nice and told me that no, it was a very painful surgery and I should expect a long recovery. The surgeon came in and when I told him about it, he just patted me on the arm and said, oh I would have never told you that. I wanted to punch him in the mouth. Needless to say, I found a new doctor. So with all of that; I have been dealing with so many things I never expected even over a year out.