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

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?

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

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

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.

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.

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

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.

@duckdogg1943 I was treated for thoart cancer in 2019 with radiation and chemo ,and went back to work and in 2022 my thoart started closing and could not breath . I was also getting fluid in my lungs ,so I had larjectamy done. I breath out my neck and eat in mouth. It is alot of up keep a tuff at first but it gets better and manageable..I have my thoart dilated every 3 months because my thoat closed but it does not effect my breathing because I breath thur neck..It took me about 3 yrs to get back to some what normal life..but zi am six years cancer free and have enjoyed 2 new grand girls that I love so much

@jimthomasintl see I had to get total larjectamy because the radiation damaged so much of my thoart. I am 6 yrs cancer free and have adjusted to all changes with the help of a mighty God. I have give up swimming but still keep my pool going for my grand girls

@rbitcher I wanted to avoid total larjectamy at first because I did not want to lose my voice because I am a pastor. I Had radiation and chemo and the chemo always made me real sick but .I was back to work in 7 months and cancer free.A year later all the damage from radiation started fluids were getting to lungs and could not breath or eat.I had larjectamy in 2022 and it was ruff but know am living life with alot of changes and breath great just from stomach in my neck. I have my thoart dilated every 3 months so I can eat because it closes from radiation damaged. But does not effect my breathing because I breath thur neck. I am going into my 6th yr cancer free