Tongue cancer: How long is the process from treatment to recovery?

Hi @earlenhaven

I was diagnosed with Tongue cancer on my left side of my mouth on March 1, 2024, and had a left partial glossectomy with a radical forearm free flap surgery on April 3, 2024. It also included a modified radical neck dissection. This one was not caused by HPV and was most likely from too much radiation from my first cancer (tonsil- 2008) as it is literally adjacent to it. That being said, I too had a lot of excess salvia/mucus but with Swallowing/ Speech Therapy and specialized Head & Neck PT, it definitely helped some and now that I am over 2 yrs. out and it is way better, however, still get some occasional if talking a lot and I don't keep my head level or up.

In addition, I chose the nose feeding tube which is temporary 10-14 days and get a swallowing/speech therapist now. You will also have to be very aware of the higher chances of getting aspiration pneumonia and lymphedema after the surgery. I ended up in the ICU for 7 days 2-3 months later for having Aspiration Pneumonia- took 7 liters of infection out of my lung cavity.

I honestly don't remember much pain as at most I took only Advil or Tylenol and that was enough. I went out on disability at work for 32 weeks as I have to talk for the majority of my occupation.

You will get better.
Best,
Rob

I have 2 questions:

Would like to hear from more people.

For those of you in a similar situation as mine, how long was it from the
day you were diagnosed to full recovery or was there not ever full
recovery? I have a horse farm and I teach riding and I am trying to
plan what I need to do. And were you ever done with multiple
doctor's appointments?

Also, was the pain any better after they removed the cancer than before? Or
were other problems that developed still causing pain? My biopsy has been
very painful and had very limited speech. Does that change after
treatments? ...and the time frame.

Any other "facts of life with my type of cancer" would be helpful.

Thanking you in advance for responding.

Earlen Haven

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!

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!

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!

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?