Tongue Cancer: What are my treatment options?

Posted by rkaspet @rkaspet, Oct 2, 2022

I am having no symptoms, but after a CT Scan they thin I have cancerous patch under my tongue, what options do I have at the Mayo ?

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@jem284

Hello, I start chemo/radiation on Tuesday the 25th for HPV -16 cancer at the base of my tongue. Surgery was not an option because of the size of the tumor. Only as recently as Monday the 18th have I had any real discomfort as the tumor feels like it’s become larger in my throat. I’ll receive 35 days of radiation w/ chemotherapy once a week.
Similar to your cancer? If so, how effective was the chemotherapy (i.e. was the tumor noticeably reduced in size after any specific treatment? How long before the radiation really affected your ability to swallow? When did you have the feeding tube installed?
Thanks,
Joe S

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@jem284, how are you doing your first few days into treatment?

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I was recently diagnosed with base of the tongue carcinoma. I am really frightened. I have read about all of the treatments for this condition and am even more scared. I will have biopsy surgery to find out exactly what's going on in January. I am to old to go through a tongue surgery and having to learn to speak all over again. Can anyone with experience with this disease offer me an tips, inspiration etc.?

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@anybody10

I was recently diagnosed with base of the tongue carcinoma. I am really frightened. I have read about all of the treatments for this condition and am even more scared. I will have biopsy surgery to find out exactly what's going on in January. I am to old to go through a tongue surgery and having to learn to speak all over again. Can anyone with experience with this disease offer me an tips, inspiration etc.?

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Hi @anybody10, welcome. It's a shock to get the news of cancer. I moved your message to this existing discussion:
- Tongue Cancer: What are my treatment options? https://connect.mayoclinic.org/discussion/cancer-under-my-tongue-and-raised-lymph-nodes/

I did this so you can read previous messages of support, hope and healing and connect with other members like @rkaspet @alpaca @newtonguecancer @calenbd @loli @sandralea58 @jem284 and others.

I can imagine that you are really frightened and waiting for the biopsy to get more details is tough. You're not alone.

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@anybody10

I was recently diagnosed with base of the tongue carcinoma. I am really frightened. I have read about all of the treatments for this condition and am even more scared. I will have biopsy surgery to find out exactly what's going on in January. I am to old to go through a tongue surgery and having to learn to speak all over again. Can anyone with experience with this disease offer me an tips, inspiration etc.?

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Hi @anybody10 I am 76 and am still having treatment for head and neck cancer. This time dental reconstruction.
I don't know what the biopsy surgery will consist of. My guess is that it will be quite brief and you will recover well.
Base of tongue cancer is usually treated with chemoradiation - not a nice treatment at all - about 7 weeks duration. But it shouldn't affect your speech.
My tip would be to have a thoughtful discussion with your medical team after the biopsy about treatment options and your fear about your ability to handle harsh treatment.
So understandable to be frightened. And having to wait until January is awful. Eat and drink as much as you can before your treatment. Eat things you enjoy. It's hard to eat during treatment. Wishing you well.

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@anybody10

I was recently diagnosed with base of the tongue carcinoma. I am really frightened. I have read about all of the treatments for this condition and am even more scared. I will have biopsy surgery to find out exactly what's going on in January. I am to old to go through a tongue surgery and having to learn to speak all over again. Can anyone with experience with this disease offer me an tips, inspiration etc.?

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My husband is just finishing his last radiation treatment tomorrow. (35 in total over 6 weeks). SCC HPV+ on right tonsil and base of tongue. It hasn’t been easy, but it is tolerable and you will get through it. There is a lot of good information here and ask many questions to your team of doctors and therapists. The Speech Language Therapist gave him a set of exercises to do before radiation even began. He was diligent in doing them, and he ability to swallow has not been an issue. Taste was the first to go, and after that it was all about texture. He has been eating throughout the treatment, with only a few days where all he could do was water, tea with honey and some Kraft Dinner ..of all things. Boost powder in whole milk was also a favourite. Smoothies in the morning. And the Magic Mouthwash, tylenol every 6 hours. He was given steroids temporarily to bring down the swelling to help him through, and they really helped. He has lost weight, and it wasn’t all roses. I know it’s a shock to hear the C word. We knew in early August what this was and his treatment did not start until November 8. Waiting is not easy for sure. We are so grateful for the team of science driven specialists who work tirelessly for us to live. They won’t let you down! I wish you strength and determination. You got this!

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@alpaca

Hi @anybody10 I am 76 and am still having treatment for head and neck cancer. This time dental reconstruction.
I don't know what the biopsy surgery will consist of. My guess is that it will be quite brief and you will recover well.
Base of tongue cancer is usually treated with chemoradiation - not a nice treatment at all - about 7 weeks duration. But it shouldn't affect your speech.
My tip would be to have a thoughtful discussion with your medical team after the biopsy about treatment options and your fear about your ability to handle harsh treatment.
So understandable to be frightened. And having to wait until January is awful. Eat and drink as much as you can before your treatment. Eat things you enjoy. It's hard to eat during treatment. Wishing you well.

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I to was diagnosed with Larynx Cancer, 2 rounds of Radiation per day for 7 weeks, it was rough..finished treatment 3/22, no recurrence as if Oct 18th, but still getting some Side effects
Hoarse throat is the worse, but thank God most came back, but the Mucus & dry mouth, do you get these Side effects, I think there going to be around for a long time..hugs & Best of Luck to you..

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@rkaspet

What treatments r there without removing tongue?

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I’m 6 years out. Yes you have options! I had stage IV base of tongue which spread to my neck and lymph nodes.
I had too much for surgery as they would have had to remove my tongue etc.
I was told they had 1 shot to kill it which meant hitting me as hard as they could with chemo and radiation. My chemo Dr told me they was going “old school” on me and that I wouldn’t like them very well, lol.
Though I was forced to go on disability, I am still alive!

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@sandralea58

My husband is just finishing his last radiation treatment tomorrow. (35 in total over 6 weeks). SCC HPV+ on right tonsil and base of tongue. It hasn’t been easy, but it is tolerable and you will get through it. There is a lot of good information here and ask many questions to your team of doctors and therapists. The Speech Language Therapist gave him a set of exercises to do before radiation even began. He was diligent in doing them, and he ability to swallow has not been an issue. Taste was the first to go, and after that it was all about texture. He has been eating throughout the treatment, with only a few days where all he could do was water, tea with honey and some Kraft Dinner ..of all things. Boost powder in whole milk was also a favourite. Smoothies in the morning. And the Magic Mouthwash, tylenol every 6 hours. He was given steroids temporarily to bring down the swelling to help him through, and they really helped. He has lost weight, and it wasn’t all roses. I know it’s a shock to hear the C word. We knew in early August what this was and his treatment did not start until November 8. Waiting is not easy for sure. We are so grateful for the team of science driven specialists who work tirelessly for us to live. They won’t let you down! I wish you strength and determination. You got this!

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I appreciate all of the helpful info on what to expect. I do hope your husband's cancer does not return. Did he have surgery to remove part of his tongue? That is one of my biggest fears. Does the chemoradiation cause any problems with speech and taste?

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Hi Anybody10 . I had cancer at the base of my tongue and left tonsil. I had chemoradiation treatments for 7 weeks. No surgery. The treatments are rough, but you can get through it. The radiation can affect your taste, some foods you may eat will not have any flavor just bland. And if the radiation narrows your airway, you might need a trach in your neck for breathing. Your speech might not be the same, your voice might sound hoarse and raspy. I have a trach cause i have trouble breathing, plus my epiglottis is tilted backwards, causing it not to work. So I can't eat or drink by mouth. All this caused by wonderful radiation. It is very scary to go through this, but we have no choice if we want to stay alive. Everybody has different outcomes. It depends on the amount of radiation they receive, and where it is aimed at in our throats. If you have any questions or concerns, I'm here for you. God will help you through this.

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@anybody10

I appreciate all of the helpful info on what to expect. I do hope your husband's cancer does not return. Did he have surgery to remove part of his tongue? That is one of my biggest fears. Does the chemoradiation cause any problems with speech and taste?

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My speech is slurred and it is still difficult to swallow most foods after being 6 years out. My epiglottis is barely functioning which causes aspiration so I really need to be careful when eating and prefer to eat solids only when my wife is home.
Also, the treatments were as strong as they could give me so I am left with tinnitus, migraines, stiff neck, weakness and brain fog.
Though I’m not like I use to be I’m still alive!

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