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Relief from Radiation Fibrosis Syndrome

Posted by stephenrfleury @stephenrfleury, May 13, 2025

Had SCC on the base of my tongue and a couple of lymph nodes in 2020 and was treated with radiation and chemo. Like many of you, I had pretty severe fibrosis in my neck.

In the past month, I had a combination of 2 treatments at Mayo in Phoenix. First, I had Botox injections in my neck to relieve some of the stiffness in the muscles. Those were followed up with a surgery called fat grafting, where they harvest fat cells from your body (belly for me), and inject those cells into your neck to soften the fibrosis. They also breakup some of large fibrotic cords. It has relieved just about all of my pain and much of the stiffness.

Interested in more discussions like this? Go to the Head & Neck Cancer Support Group.

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omaest | @omaest | 5 hours ago
In reply to @josk "@56tburd wow .. 2 decades !! I had radiation and chemo treatment in 2026, and late..." + (show)
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@56tburd wow .. 2 decades !!
I had radiation and chemo treatment in 2026, and late effects started in mid 2020. I was not aware of all these late effects that I am having now - and I went through a 'panic' mode in the first couple of years - but now, resigned myself to the fact that it's here to stay - and am trying to cope.
Re swallowing - am ok for the time being - cut my food into little pieces, soft food - and avoid meals or eating out in public - pretty much am on my own. Is this how you handle swallowing issues?
Also, as told my oncologist I refuse to have a feeding tube for nutrition intake.
I, too, am glad that I found this site!!
Take care!!

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@josk The time might come when there is no other way to receive proper nutrition. I too refused even the thought of a feeding tube and held off for almost too long. Finally in 2024 after being hospitalized for the second time for aspiration pneumonia. I agreed. At that time I had become too frail to fight off any respiratory diseases and even smoothies had difficulty going down. I had lost 30 lbs. in less than 6 months. After getting the tube I thought it would extend my life long enough to get my things in order before passing. Then it dawned on me that I was gaining weight and energy and I might have some good times ahead. I also became aware of the people who have lived most of their life with a tube. I'm in my second full year and feeling good and living almost a normal life. Yes, there have been issues but so far they are minor. I do hope you won't be faced with the decision of tube or die. I wish I hadn't gone so long before getting one. Take care

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56tburd | @56tburd | 3 hours ago

My sister endured a second coming of HNC on the tongue after a 2-year reprieve. Radiation was no longer an option the second time, and she didn't wish to suffer the loss of her tongue, so she opted for immunotherapy. It didn't work. Despite the difficulties I've experienced, I would never suggest anyone skip radiation. Until other methods demonstrate the same success rate, a wrong decision may be your last decision.

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josk | @josk | 2 hours ago
In reply to @omaest "@josk The time might come when there is no other way to receive proper nutrition. I..." + (show)
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@josk The time might come when there is no other way to receive proper nutrition. I too refused even the thought of a feeding tube and held off for almost too long. Finally in 2024 after being hospitalized for the second time for aspiration pneumonia. I agreed. At that time I had become too frail to fight off any respiratory diseases and even smoothies had difficulty going down. I had lost 30 lbs. in less than 6 months. After getting the tube I thought it would extend my life long enough to get my things in order before passing. Then it dawned on me that I was gaining weight and energy and I might have some good times ahead. I also became aware of the people who have lived most of their life with a tube. I'm in my second full year and feeling good and living almost a normal life. Yes, there have been issues but so far they are minor. I do hope you won't be faced with the decision of tube or die. I wish I hadn't gone so long before getting one. Take care

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@omaest thanks for your positive input on the feeding tube!!
As told to my oncologist - I don't see the point of being alive when I am not able to taste or enjoy my food. And because of the swallowing and speech issues - I am not able to get together with friends for a meal or whatever - thus my lifestyle is very much affected. Also, because of speech issues - I tend to have to struggle when I need to go out to purchase anything - and would need help from the customer rep!!
All these adds up to the why I would refuse the feeding tube - but, meanwhile I will try to maintain my weight and take small bites when eating so as not to choke.
Again .. do appreciate your positive view on feeding tube, and take care!!

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