Looking for tongue reconstruction survivors

Hi. After 12 years of remission my tongue cancer returned with a vengeance in December - two tumors removed, one round of targeted brachy radiation, a new tumor appearing almost monthly. I "changed teams" to University of Chicago - much more satisfied with the doctors and staff there. I went through five weeks of "induction" chemo (Carboplatin and Abraxane), and the tumor shrugged it off - if anything, has grown. As a result they see no point to moving me forward into in-patient chemo/radiation.

I am now down to a choice between palliative care (which might include an immunotherapy trial) and a total glossectomy (tongue removal). They reconstruct a placeholder where your tongue used to be using skin from your thigh, forearm, or chest. All future nutrition via PEG tube (because this new pseudo-tongue doesn't have any muscle to swallow or keep food going down the wrong tube). Tracheotomy to start but possible I can wean off of that if not aspirating. Probable "mop up" chemo and radiation to follow. Communicate largely via text-to-speech phone app.

Have any forum members been through this and living with this? I'd so appreciate hearing your experience (either via public comment or private message). The doctors and staff make this sound like the recovery and adjustment is tough but ultimately manageable. The goal is more time than with just palliative care. Even though the area with all the cancer (currently) would be removed, even medium-term remission statistics - and we all know how we feel about those - are surprisingly how (high probability of some recurrence somewhere).

But that's future stuff, which we all know is unknown. Right now I'm looking for anyone living with this "new normal" and their feelings about it. Thanks for any input anyone can share.


  • Dav1965
    Dav1965 Member Posts: 132
    Tongue Reconstruction

    I had 7/8 of my tongue removed and replaced with my thigh. After that i had 3 or 4 more surgerys to shape my tongue. It was a long process but i am 5 years out now. I sound funny when i talk and i am hard to understand especially when i am tired. I had a trach for about 3 months. It took that long for all the swelling to go down so i had a trach to breath. I had all my work at UNC. A trully great team. I would not be here if it was not for them. I can swallow but only when i think about it. Good luck on your journey.