I am two years and three months post treatment and have had a succession of clean scopes and scans, but today I got some scary news and I wonder if others have dealt with my issue. For about two months I have had trouble swallowing water and other thin liquids. I choke pretty bad unless I really concentrate and even then I can choke. My voice is also hoarse all the time and I talking leaves me breathless - though I can workout at the gym pretty hard and not be out of breath. I try to cheer at my sons' baseball games and I don't recognize this squeaky voice that is coming out of my big mouth. My primary care physician ordered me to have a barium swallow, which I did three weeks ago. It showed some scarring on my epigIottis, enlarging it, which he thinks accounts for the problem. I asked, "Why now, why not when I first ended treatment?" and he said that it was not unusual to have your voice change years after treatment and he talked about late scarring after radiation. Today, though, I had my three-month scope with my ENT, and he said he could see that my left vocal chord is paralyzed and there is a new lesion there. He has ordered a CT Scan. He says "don't press the panic button yet." And I am trying not to. I did read online that vocal chord paralysis is a side effect of radiation to the head and neck. I am just worried that it is more than this since it has presented itself two years after treatment. Well, this is a long post. I appreciate any insights any of you have. I don't usually think about recurrence. My tumor was HPV+ which I know is a blessing. But it's been a hard day. Thanks for listening. -Michelle

I made a post about this in Procuedures. My last visit with my ENT, he did a scope, and said my vocal cord was not moving, vocal or voice box paralysis, probably from all the radiation I had, and is why my voice is hoarse, lowered, and made a referral to see an associate who does Collagen Injection For Vocal Cord Augmentation, to make the voice stronger, and may help with coughing too. Tomorrow I go for my consultation with the otolaryngologist/Laryngologist, but I had no recent suspicions scans, lesions. I did have uptake last year on a PET, but may have been from swallowing. I had rads in 2011, 2x in 2012, so the first was two years ago in February. Good luck with everything.

It was in Procedures, but I may have deleted the link, anyway, here it is.

http://www.nice.org.uk/nicemedia/live/11166/31362/31362.pdf

http://abcnews.go.com/GMA/DrJohnson/story?id=127887&page=1

Thank you. This is helpful.

I'm a newbie having finished treatment just 6 weeks ago but I've read enough to know that radiation is the gift that keeps on giving years after treatment is over. I know of a woman that developed swallowing issues 12 years after treatment and is now relegated to PEG tube feedings and some soft foods.

Positive thoughts and prayers that things are resolved beneficially.

"T"

I am almost 10 years out and am losing my voice. It is a combination of neuromuscular issues from radiation. I am also losing my swallowing and breathing muscles. It started about 5 years out but I do think it is more the exception. They statistic I was told was .5% but also includes any cancers with radiation to the upper chest.

I say this with hesitation because I do not want everyone to rush to the doctor with similar problems. Statistically, if correct as I have not verified other than one study, that could mean 50-100 people a year with similar issues. With the amount of muscle loss I have experienced I wonder which atrophy is next and will it bring the whole house of cards down. I am amazed at what I can still do and have worked up to doing after nothing left but a bucket of bones and tendons at one point.

My swallowing problems started with atrophy of the constrictors and just keeps moving down the throat which causes aspiration. Also, the right side of my epiglottis no longer lifts so I choke on liquids. I have been told it is progressive, untreatable and not curable. I just haven't found what works yet. I still eat regular foods but try to drink mostly water. Protein shakes and smoothies throughout the day. I have had 6 barium swallow tests and motility studies and other swallowing tests and it has always been about the same as a few weeks after treatment with sporadic muscle spasms from the mouth to the stomach and through the intestines that seem to be the culprit with a variety of suggested possibilities from brain stem damage from radiation to nerve damage from scar tissue in the myelin from radiation damage to autonomic nervous system/medulla oblongata damage from radiation to spinal cord damage from radiation, etc., etc., etc.

The only agreement is all the doctors I have seen for almost 10 years all blame it on radiation except the Radiation Oncologist, of course. I did get to see how bad my signature was during treatment when they flashed out all the treatment consents I signed fully knowing long term damage could result. I would probably do it over if I had to. I know I couldn't of crammed much more living in than what I did experience while the medical community scratched their head for years.

Love your comment about your radiation oncologist. I remember I was complaining to mine about dry mouth and he said something like, "at least you're alive," which I know is true and I am grateful, but not a day goes by that I am not reminded of my cancer because my mouth and throat are so compromised even two years out. And I like my radiation oncologist, I do. But he also told me at my last check-up that for HPV+ cancers (like mine) the standard treatment will probably be reduced from 7 to 5 weeks. Good for all those coming after me; they will probably have fewer side effects. But I am stuck with the mouth I got and now this paralyzed vocal chord. Ugh. I appreciate your taking the time to share your experiences with me. -Michelle

My wife went to work where I received radiation. As I deteriorated, they stopped inviting me to their get togethers. I was glad I didn't have to hear that comment, "at least you are still alive" one more fricking time! I never had to say anything. Now I have moved into the Wonderboy era because they want to know what I did to stay alive. LOL

I have been trying to get a company that uses something similar to the VitalStim for stroke recovery to see if their device works for radiation issues. Have you tried the VitalStim and speech therapy? I have had a couple rounds with them but planning some more as soon as I get the breathing dealt with. Too unsettling to not be able to breath at night for many months now. There are many things to try but you have to be more diligent while you still have voice left.

Just wondering, did you have XRT or IMRT?

IMRT - 35 rounds

I had a consultation with the voice doctor today, who did a scope, vocal test, and his findings is one fold is paralyzed, and voice good enough not to have a collagen injection, which is fine with me, I have to follow-up with my speech and swallow therapist for dysphasia.