Post-surgey cancer of the tongue. Will I ever be able to eat?

Hello everyone. I'm 33 years old and was diagnosed with oral cancer of the tongue 2 months ago. After scans it became apparent that the tumour had spread across the midline of my tongue, meaning that to remove it with clear margins they would have to remove both halves. So in august I had surgery to remove all of the tongue from my mouth. They constructed a flap with muscle and skin from my thigh and I have to undergo radio and chemo therapy stating in October.

Despite having no real tongue to speak of my speech isn't too bad (people can understand what I'm saying- apart from certain sounds like D, G, L, N, T, th etc) but surprisingly I get by fairly well.

The issue that's really getting me down is eating. I have a stomach tube, but I can manage (and taste!) liquids. Although I struggle with anything a bit thicker (mash potato for example) as I just can't move food from the front of my mouth to the back.

I suppose my question is- will this ever get better? Is there anyone else who has had as much of their tongue removed as me that can manage more than just liquid? If I have to rely on the feeding tube for life as a "top-up" then I can live with that, but it gets me down to think I might never eat again.

Any in-put much appreciated.

Heather
Original Post

Hi Heather,

I have only just joined this group so only just read your story.

I had cancer of the tongue and was diagnosed in 2014 and I was 43.

Cut a long story short and in 2016 I had surgery to completely remove my tongue and voice box.

I also had the reconstructive surgery in my mouth and had the peg tube.

I hope this helps you,

I can swallow very soft food,it needs to be mashed or blended to around the consistency of baby food.

I use plenty of liquid to help get food down,it can be tricky and stuff does get lodged from time to time.

I found a summer plastic picnic spoon in the pound shop (came in a pack of 6 spoons forks and knives for picnics) 

The spoon itself is quite long and not as wide as a regular spoon,I use this to get food to the back of my mouth and with a bit of persistence I can move food around to help it on its way.

I had the peg removed around 8 to 12 months after surgery.

I would like to say that yes it is tricky,yes some days a much worse than others but it does get better.

I hope this helps you?

 

Mark.

Heather,

I'm 62 and deal with a similar after-effect of surgery.  I had radiation for tonsil cancer in 2004, then for new tumors around the base of my tongue in 2017 they removed part of my tongue and pharynx.  They made a flap for me out of tissue from my wrist.  It tingles, does not move well, and is sort of numb to pain.  I got off the peg one month after surgery, by swallowing an all liquid diet, and I have therapy therapy therapy trying to get me to swallow better.  It's that problem of getting food from mouth to throat, and then cough cough cough.

This morning I ate one Ritz cracker as part of my daily exercises, and I can manage a full serving yogurt or a few bites of pancakes with syrup, but I've sort of resigned myself to an all-liquid diet.  I'm already old, and it is sad to think of how much of your life you have ahead of you with this awful handicap.  

So much of the pleasure we get out of life depends on enjoying food, and now we have to find something else.  I suppose we should be grateful we survived and all blah blah blah, but whatever.

So sorry to read your story  I had about 3/4 of my tongue removed in 2003 and while it isn't easy, I manage most things, albeit slowly, noisily & messily.  I guess  you have to persevere & find your own way of eating - thicker foods & drinks are easier (creamy mash, for example, and hot chocolate/choc milk are far easier for me - I live of those two drinks - which are highly calorific, but that's not always a bad thing  Make the most of your Speech & Language Therapist and your dietician  Good luck 🍀❤️

Hi all,

Ive never commented here before but my dad at 56has been diagnosed with base of tongue cancer in 2012 and have had to remove his tongue with the muscle flap replacement from his thigh. He is speaking and swallowing fine, he is a radiologist himself and there are days when he gets frustrated that his patients can't understand him but he gets through it. He has restricted himself to soft diets, NutriBullet has been a friend. Eating out has also been a challenge, French restaurants that serve a good soup is the norm these days, no more chicken or steaks. He still enjoys cooking for us though, with lots of garlic and onions, must be the smell that excite him.

I'm glad to hear survivors who share similar stories. 

Also, if anyone can recommend a good speech and language therapist in the London area it would be a great help. 

I am a cancer research scientist myself and its heartbreaking to know that side effects of the treatment really affect a patient's quality of life and the field is working hard to target the tumour more precisely to avoid these harsh side effects. 

 

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