Laryngeal Ca: After radiation, how many have laryngectomy & trach?

Posted by rbitcher @rbitcher, Nov 13, 2022

Larynx carcinoma glottis small cell squamous
How many patients who undergo radiotherapy have laryngectomy and tracheostomy afterwards?

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Welcome, @rbitcher. I'm inviting other members who have experience with laryngeal cancer or similar head and neck cancer like @mindyt @srm @loli @jeffk @alpaca @duckdogg1943 @suz22 @thomason to share their experiences with you. You might also be interested in this related discussion:
– Complete laryngectomy https://connect.mayoclinic.org/discussion/complete-laryngectomy/

Let me me see if I understand your question correctly. You're interested in knowing how many people have had radiation first to treat laryngeal cancer and if they've had a laryngectomy and tracheostomy afterwards, correct?

Are you currently undergoing radiation treatment?

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@colleenyoung

Welcome, @rbitcher. I'm inviting other members who have experience with laryngeal cancer or similar head and neck cancer like @mindyt @srm @loli @jeffk @alpaca @duckdogg1943 @suz22 @thomason to share their experiences with you. You might also be interested in this related discussion:
– Complete laryngectomy https://connect.mayoclinic.org/discussion/complete-laryngectomy/

Let me me see if I understand your question correctly. You're interested in knowing how many people have had radiation first to treat laryngeal cancer and if they've had a laryngectomy and tracheostomy afterwards, correct?

Are you currently undergoing radiation treatment?

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Yes I'm sechuled to have a laryngectomy I just wanted to know I'm I making the right choice, it's a big step from what I here.Just want some insight on it

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Hi rbitcher. Welcome to the site.
I had left tonsil and base of the tongue cancer in 2018. It was my 2nd time. 1st cancer I had was of the left vocal chord.
I had radiation and chemo treatments for my most recent cancer. I received such a high dose of radiation cause my tumor in my throat was large. It caused alot of damage in my throat. My epiglottis is tipped backwards, and does not function at all. So, I can't eat or drink by mouth. I'm on a FT. I also have a trach in my neck.
My ENT said I need a larengectomy. But I have gone through so much, thst I decided NOT to get a larengectomy. One really good woman surgeon once told me, just because you get a larengectomy does NOT mean you will be able to swallow. Another words, thier is no guarantee. See, the radiation narrowed my throat badly. So, I would rather have a permanent FT, and trach, versus getting a larengectomy. I did my due diligence and researched what having a larengectomy entails. And believe me, it scared me! Besides not being able to talk, you have to learn how to use that microphone, and the maitenance of your throat stoma not as easy as it looks. It's alot of work to me.
Now this is just my opinion, and I don't know how bad your throat is, and if your doctor gave you a choice or not. One thing is for sure, once you get a larengectomy thier is no going back. You lose your voice box permanently.
The hospital I go to, arranged a meeting fir me to actually meet a woman who had a larengectomy. Every time she drank her soda, she would wince, like she was,straining and it was discomforting to swallow. When I asked her a few times, does it hurt when you swallow, why do you have a funny look on your face? She never gave me an answer. So I knew right then, something was wrong.
But some people get the surgery, and live thier lives like that.
I would take some time before giving a final answer. Do your research on larengectomies, and most importantly get a 2nd opinion.
Hope this helps!

Suz22

REPLY
@colleenyoung

Welcome, @rbitcher. I'm inviting other members who have experience with laryngeal cancer or similar head and neck cancer like @mindyt @srm @loli @jeffk @alpaca @duckdogg1943 @suz22 @thomason to share their experiences with you. You might also be interested in this related discussion:
– Complete laryngectomy https://connect.mayoclinic.org/discussion/complete-laryngectomy/

Let me me see if I understand your question correctly. You're interested in knowing how many people have had radiation first to treat laryngeal cancer and if they've had a laryngectomy and tracheostomy afterwards, correct?

Are you currently undergoing radiation treatment?

Jump to this post

No; but the surgical ENT wants to try radiotherapy alone first. I want to avoid tracheostomy and laryngectomy. Wondering how many people don’t need it after radiotherapy alone.

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@rbitcher

No; but the surgical ENT wants to try radiotherapy alone first. I want to avoid tracheostomy and laryngectomy. Wondering how many people don’t need it after radiotherapy alone.

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I went through two separate proton beam radiation therapies- 35 (2019) and 5 (2021) doses. I had a feeding tube for 15 months in 2019 and most of 2020. August 2021 I had a tracheostomy done by my ENT. I was scheduling it for 4Q 2021, trying to avoid it as long as I could, but was in distress breathing so had it done after an incident when I was "drowning in air." This was an incident to be avoided-it was frightening for me and my family. Traches have plusses and minuses-plusses-I can sleep without a CPAP now and exercise without breathing difficulty so can climb hills and golf-the minuses-I can't swim, boat and have a low gravelly voice. The plusses win. No larengectomy to date.

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@jimthomasintl

I went through two separate proton beam radiation therapies- 35 (2019) and 5 (2021) doses. I had a feeding tube for 15 months in 2019 and most of 2020. August 2021 I had a tracheostomy done by my ENT. I was scheduling it for 4Q 2021, trying to avoid it as long as I could, but was in distress breathing so had it done after an incident when I was "drowning in air." This was an incident to be avoided-it was frightening for me and my family. Traches have plusses and minuses-plusses-I can sleep without a CPAP now and exercise without breathing difficulty so can climb hills and golf-the minuses-I can't swim, boat and have a low gravelly voice. The plusses win. No larengectomy to date.

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Is your trach permanent, or might it come out one day?

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Unfortunately, it is permanent. I asked my ENT about it this year and they told me the damage from radiation was too severe. I have accepted it and am living with it. I am still trying to find a product on the market to fully seal the hole so i may be able to swim in the ocean again. I live on the beach and have not accepted being a total landlubber.

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