Hello everyone,

This is my first post. My significant other was diagnosed with tongue cancer a couple months ago.

HIs surgery was Tuesday so for the past couple months I have been a nervous wreck worrying about so many things that I'm sure you all are all too familiar with. How would he look, Will he be able to speak. Praying that they would take less of his tongue than they originally thought, which we were told 56-60 percent in the beginning.

They removed 70 percent of his tongue and took lymph nodes from the same side of his neck and part of his jaw and bone. They used tissue from his arm and leg to re-build everything. I was expecting 50 percent of the tongue. I was hoping that it would be less. Less than 50 percent gave me hope that he could re-learn to speak and that we could go back to somewhere near our normal lifestyle.

70 percent sounds really scary. The doctors seem to think he will still be able to speak with only 30 percent of his original tongue, and the rebuilt portion, of course. They believe his biggest problem will be swallowing . Today the doctor told him that it is possible he could be on the Feeding tube for life. He is very upset about that.

Here is the good news. He looks great. Exactly the same as before he went in. (Besides the scar across his neck) I was so worried about the jaw surgery. It has been swollen for a day or two now but he looks so good. And he was in really good shape physically so he is healing really well. They expect to send him home in a couple days.

He says he cant feel his tongue at all yet. It's been 3 days. The Dr. said that is normal. He had a ton of mucous and has had to suction his mouth constantly. They have already began the process of removing the trach. They have told him he can't try to drink yet but they did let him swab his mouth with a moist swab thingy, (sorry I haven't familiarized myself with all of the terminology yet).

So, I'm still really afraid about this speech returning to normal after they removed so much of his tongue. And I am really concerned about him being able to swallow. They have told him not to try to talk or do anything right now. I have been able to read some suggestions on message board about beginning to practice moving your tongue and doing tongue exercises as early as possible but they haven't told him to do that yet.

I'm wondering about the swallowing thing. They didn't really explain why they are concerned about that. Is it because they took the portion of tongue that is used for swallowing, maybe? Is it possible that if he works really hard at strengthening it that he will be able to swallow and have the feeding tube (peg tube, I believe it's called) removed eventually?

So, if any of you guys have any answers or suggestion, I would greatly appreciate it.

Thanks so much,

Pam


Significant Other diagnosed in May: SCC Right Lateral Tongue , Right Floor of Mouth. Surgery July 30, 2019: Subtotal Glossectomy. Right Mandibulectomy, Extraction of All lower teeth. Removal of Right Lymph nodes; SCC in 4 of 23 Lymph Nodes, Reconstruction using tissue and bone from forearm and tissue from thigh.
Former smoker: 30 years and family h/o Cancer
Radiation began 9/6/19 and chemo 9/11/19.
Finished treatment in October 2019.
Awaiting CT Scan.