tongue cancer

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 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

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