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

Hi,
The only thing that is guaranteed with this disease is that your experience will be unique to you. On this site, there are a plethora of stories of people sharing the good, the bad and the ugly of their “journey” (which is a word I hate because it makes this sound like something enjoyable). Some of us started out with tongue cancer like your self, went through chemo radiation and all the associated effects from it, and are now dealing with metastatic disease in other parts of our bodies. Unfortunately, not everyone gets better. It’s just a fact. I wish you and everyone else the best and I hope your “journey” is the “easiest” it can be.

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

@roblem After my throat surgery they inserted a nose feeder in me too..Being that the tube was smaller it liked to get clogged more often and it was constantly rubbing my soft palate before it went down my gut which caused a blood clot which I hocked up one night..The tip of my soft palate was removed during surgery and that tube rubbing didn't help it to heal..Also the tube going into my nose was sewed up inside my nose so it wouldn't fall out..I finally got them to insert a stomach PEG tube through the stomach wall instead. It's been 4 1/2 years with it due to mucous building up above my palate 24/7 in which it makes it hard to swallow normally. Could that be from the radiation or the 33 lymph nodes removed on the left side of my neck?