tongue cancer

My husband had tonsil and 1 lymph node affected, tonsil removed the as he was in a clinical trial,15 radiation treatments and 4 cisplatin infusions. It probably took about 2 months after treatments to feel ok again. It's tough but you can do it. Keep a good supply of ensure, this helps when appetite isn't too good. Hope you heal well and fast.

@lizzyj58
Tks!
Earlen

@earlenhaven Just want to clarify. It was 2 months after the whole thing was over to feel better? How long was entire process?

What is the plan to remove these lesions?

ENTIRE PROCESS. I had cancer of the upper front of my tongue with about an inch removed. That was in December 2025. Two days after the surgery, while still with a trach and feeding tube, the surgeon came to my room to determine if I could talk , and be understood. It was with difficulty. Trach removed after a few weeks, feeding tube within a month. Started Home Health Care after a month including speech therapy. Now, 8 months later, have some difficulty with speaking, avoid saying some words, and others have difficulty understanding me at times. Radiation therapy started after a month after the surgery —everyday for 30 days —that took three hours a day including travel to and from center. Soon after that I was placed on Lymphedema Therapy twice a week which ended in July 2026. Careful medical discussion among doctor team whether to do chemotherapy— it was decided not to— because the biopsy confirmed the 60 lymph nodes removed were all negative. Now (Aug 2026) I am done with all out-of-home therapy, and spend over a hour a day on a pneumatic jacket and pump for permanent side affects of the surgery and radiation —lymphedema of face, neck, upper chest, shoulder. Permanently will be on compression garments for chest and neck brace. My understanding that lymphedema , if ignored, only gets worse, never gets better. And can get a lot worse. Looking at the people in PT, I see how worse it could be--and how worse it will be if I do not take daily precaustions to prevent that. It should be noted that most, probably almost all, doctors have little understanding and medical education on lymphedema treatment according to according to AMA survey and Stanford Medical School. Still have problems eating and swallowing. Avoid public speaking. No feeling on tongue, limited taste, accidental uncontrollable- occasional- discharge of saliva (onto chin and floor) from time to time. Takes 3 times longer than normal to eat and 2x longer than anyone else at table. Difficulty swallowing pills. IF you are planning to go back to teaching—based on my experience — that will be difficult if your experience is what I went through. AND--I consider myself lucky that I was not as bad as some are.

@earlenhaven welcome to Connect. I hope you will find some helpful information here. My cancer was ear, not tongue so I don't have any experiences to share. Has your team discussed radiation and/or chemo prior to surgery to shrink the tumor?

Thank you or being totaly honest. It is a lot to plan for especially with a 23 acre horse farm. Things like this is what I need to know.

@sepdvm Don't know yet. I have PET SCAN this week

I’m a bit different. Though the tip of my tongue was removed, enough of my mouth was changed that I cannot close my lips and, therefore, I cannot swallow. So…it’ s g-tube forever. I’ve adjusted to Kate Farms and whatever else is handy to throw in the Vita Mix. Toughest part is all my dreams are in some way about food!