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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@anybody10

Everything I hear is so depressing. I'm to old to go through this. I just want to go pain free and let nature take it's course.

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Don’t despair. The treatment is tough but very doable. There are many new drugs that will help. The shock is just that. Work through it and seek good information and you can and you will get through this.

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@mojo244

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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Everything I hear is so depressing. I'm to old to go through this. I just want to go pain free and let nature take it's course.

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@sandralea58

No surgery. He underwent 35 rounds of radiation. Because of his age, cisplatin (chemo) was not recommended. His speech has not been affected but he did lose his taste very early in his radiation treatment. He was told that he would eventually regain his sense of taste. His neck wounds post treatment are worse now than during treatment. (he is one week after last radiation as I write this) We were also told that this would happen for 2 weeks post treatment, so we weren’t alarmed. Keep doing everything your team is recommending, and with a lot of hope and prayers, everything will work out. Stay strong!

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Thank you for your fast response. I am just beginning my cancer journey and have no idea what to expect. My initial thought is I don't want surgery to remove any part of my tongue. I am to old (79) to learn to talk all over again. I would be happy to load up with morphine and die pain free. I appreciate any and all info and advice.

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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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No surgery. He underwent 35 rounds of radiation. Because of his age, cisplatin (chemo) was not recommended. His speech has not been affected but he did lose his taste very early in his radiation treatment. He was told that he would eventually regain his sense of taste. His neck wounds post treatment are worse now than during treatment. (he is one week after last radiation as I write this) We were also told that this would happen for 2 weeks post treatment, so we weren’t alarmed. Keep doing everything your team is recommending, and with a lot of hope and prayers, everything will work out. Stay strong!

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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?

Jump to this post

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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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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@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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@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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@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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@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.?

Jump to this post

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!

REPLY
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