Relief from Radiation Fibrosis Syndrome

I've never received such a diagnosis, nor is this something I've ever heard of or have been offered over the past 19 years. The silver lining in the uptick of neck cancer is the new treatments being tried. I'm glad it worked for you. If you haven't seen my post, keep an eye on your BP. Up to 80% of patients experience baroreceptor failure after neck cancer treatment, causing one's BP to fluctuate wildly. Good luck!

Thanks for the heads up

Hi Stephen, that is wonderful to hear you have been relieved of the pain! Could you please tell me the name of your physician at Mayo in Phoenix? My husband has been dealing with the exact same issue as yourself along with other issues that comes with the treatment of SCC. I would really appreciate it if you could provide me that information so we can make an appointment as well. Thanks! Vicky

I started with Dr. Keole in Physical Therapy who was kind of the project leader. She helped me get into a PA named Alexandria Leovic, P.A.-C for the Botox injections. The surgery was with a plastic surgeon named Dr. Alanna Rebecca.

Hi Stephen
Just like @56tburd - I have never heard of any nor been aware of treatments for fibrosis.
I am from Toronto - treated with Stage IV nasopharyngeal carcinoma in 2006, and in mid 2020 I realised that I was not able to form words clearly - and that was when I was diagnosed with dysphagia and dysarthria and severe neck fibrosis.
My understanding was that nothing can be done to improve on the speech and swallowing of food or liquid - and that eventually I might have to end up with a feeding tube - for nutrition.
Currently I am taking physio therapy every other week, and also doing dysphagia exercises daily - hoping to stop my situation from deteriorating.
Is the treatment you are getting has connection to dysphagia and dysarthria?
Thanks!

For me, it is for the neck fibrosis, although I don't know whether it helps dysphagia and dysarthria. Please ask your care team and report back to the group.

From what I had goggled - "... severe neck fibrosis can lead to dysphagia (difficulty swallowing) and dysarthria (difficulty speaking) due to the stiffening of tissues and muscles in the neck and throat. This can impact the range of motion and coordination needed for both swallowing and speech...."
I will bring this up with my doctor in PMCC in my next follow-up appt - which is start of next year.

Thank you very much Stephen!

Hi, I had stage 4 tonsil base of tongue squamous cell cancer 17 years ago. I had neck dissection and edges were “dirty” so didn’t get all of it. Had chemo radiation. Got along pretty well-all teeth removed-dentures- then blessed to have fixed arches, have extreme ulcers in mouth, it was thought to be caused by poor fitting dentures but got even worse after real teeth. Had biopsy-extreme inflammation, DNA changes so tissue unable to produce ability to heal itself, due to late effects radiation. But I haven’t been able to swallow for over 3 years. Progressing worse. (I had gastric bypass 25 years ago so do not have a stomach, inability to absorb-no intrinsic factor) I asked to have a feeding tube 3 years ago, The WORTHLESS University of Iowa Hospital GE dept. refused to give me one, surgeon said would be to complicated and I would have too many post-op issues. (((((My husband is physician said no one should be turned away without trying to help in some way.)))) continued on for 2 more years, choking many times a day, trying to eat, throwing up from eating too much due to gastric bypass. Had swallow tests, several at different hospitals, all said silent aspiration and basically neck muscles paralysis due to radiation. I can not drink water from glass, some days can’t swallow spit—frightening— last summer 2024 was 90 pounds, I am 5’3” to the incompetent University of IOWA, back to GE department with my physician/surgeon husband with me. Agreed I need feeding tube, had to have appointment with surgeon, husband “Doc” and I went back and surgeon said he would not give me feeding tube I WAS TO THIN, I would have to have nasal gastric tube and gain 15 pounds first. By now I have autoimmune herpes in mouth , throat and esophagus. All my other local doctors, GP, Rheumatologist, and others said if a tube was put down my throat I would bleed to death due to ulcers. So a year later I am still here, was able to sit at home all winter and eat little things all day long and have gained 10 pounds, unbelievable all my labs are normal, not even anemia. (It totally broke my and Doc’s heart that we couldn’t go to our offices we created and ran together for 25 years, but God blessed us with perfect staff that also attended to doc’s emotions of not having me there for him. Cancer affects spouses so tragically. So finally may I ask, if you were able to hang through all this, the fibrosis you speak of could be causing some of my difficulty swallowing and especially my speech. People have a had time understanding some of my words. Doc does agree I am slurring more and I have noticed I can not open my mouth as large as I used too. We are rural Iowa, Basically University of Iowa ENT and GE departments see no reason to see me, I have wonderful local GP who also realizes University of Iowa is a death trap. Could you give me info on fibrosis. My husband can acquire any medical equipment thru his office. Thank you for letting me share this story. And you people out there who have been given a time limit-Don’t Pay Attention To Them. I was given 1 to 2 years at very most. And here I am 17 years later out working in my rose gardens. God Bless All of You…. Julie Hart

Hi Julie
WoW ... kudos to you for braving and going through all these - and with such positive thoughts !!
Since the onset in mid 2020 of severe neck fibrosis - dysphagia and dysarthria - situation limits my interaction with friends and others. Thus, in the past year or so - I have decided to try being 'ok' on my own, and take a day at a time.
Meanwhile, I do have physiotherapy treatment every other week, and I also do my dysphagia exercises every day - in the hope to not let my current situation deteriorate to the point where I would require a feeding tube to be inserted for intake of nutrition.
Again - thanks for such positivity - and enjoy your rose gardens!!