has anyone lost thir voice post treatment

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Just wondering if anyone else has lost their voice post treatment?   I am two years post treatment and just lost my voice a couple of days ago.

Robert

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  • fisrpotpe
    fisrpotpe Member Posts: 1,349 Member
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    question

    is your voice totally gone? 

    or is just raspy and weak?

    what was your treatments?

    did you have surgery?

    what type of cancer and the location of the cancer?

    thanks

    john 

     

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
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    voice

    Robert,

    I am 2y3m post and my voice is a  big topic with me.  In general terms, I either have low volume or high volume.  I get tired of speaking so I try to select short sentences or use hand and head movements.

    No, I have not lost my voice; I am just learning how to deal with my new voice.

    Matt

  • lornal
    lornal Member Posts: 428
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    I lost my voice

    I lost my voice 6 years after treatment.  That was preceded with having trouble swallowing.

    All my doctors said it was from radiation scar tissue.  CT scans, barium swallow, scopes showed nothing wrong until the last time I got my throat dialted.  A biopsly was done - cancer again.

    If one of the doctor's had done a PET scan, it might have been found sooner.

    Follow up w/ your ENT asap - and insist on a PET scan.  If they say it is radiation scar tissue - have them rule out another cancer before accepting that as the cause.

  • hwt
    hwt Member Posts: 2,328 Member
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    CivilMatt said:

    voice

    Robert,

    I am 2y3m post and my voice is a  big topic with me.  In general terms, I either have low volume or high volume.  I get tired of speaking so I try to select short sentences or use hand and head movements.

    No, I have not lost my voice; I am just learning how to deal with my new voice.

    Matt

    No

    I don't recall losing my voice. Maybe a bit raspy a tim or two but I attributed to allergy season.

  • KB56
    KB56 Member Posts: 318 Member
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    Voice loss

    Robert, I had lost my voice before treatment and after a couple of rounds of antibiotics, the ENT discovered the paralyzed vocal cord ( right side was paralyzed open and when I talked all the air was escaping so I couldn't say more than a 4 or 5 words and I was out of air.  Plus the voice was really weak).

    During treatment for some reason it moved from being paralyzed open to paralyzed closed, which was a really good thing.   Paralyzed  open can cause aspiration, weak voice and a host of other concerns.  Paralyzed closed, at least in my case, is no problem to live with and you wouldn't know it unless I tried to sing and I wasn't that good before anyway:)

    you probably want to go to your doctor and get it checked out and they may refer you to an ENT may want to put the scope down your throat the see if there are any issues with the vocal cord to rule that out.   Very minor in office procedure, not my favorite as they go up through the nose/sinus cavity and down the throat and have you make some noises to see if it's moving.    Simple procedure.   

    Hopefully the problem is corrected itself by now since it had only been a couple of days but if not you probably want to get it checked out.  

    Keith

  • dclear14
    dclear14 Member Posts: 36
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    fisrpotpe said:

    question

    is your voice totally gone? 

    or is just raspy and weak?

    what was your treatments?

    did you have surgery?

    what type of cancer and the location of the cancer?

    thanks

    john 

     

    Just started a few days ago,

    Just started a few days ago, comes and goes mostly raspy, have mucous too, kids had cough and cold in the house recently as well.  BOT with lymph node involvement, chemo and rads, no surgery

  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
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    dclear14 said:

    Just started a few days ago,

    Just started a few days ago, comes and goes mostly raspy, have mucous too, kids had cough and cold in the house recently as well.  BOT with lymph node involvement, chemo and rads, no surgery

    there are several possible causes for this

    but the proximity to your kid's colds is the likely one.  If this goes on for more than, lets say two weeks it should be brought to the attention of your ENT.  Post radiation changes can make us lose our voice, either from thinning of the cords, or paralysis due to nerve damage.  These problems can arise many years post treatment.

     

    best

     

    Pat

  • fisrpotpe
    fisrpotpe Member Posts: 1,349 Member
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    dclear14 said:

    Just started a few days ago,

    Just started a few days ago, comes and goes mostly raspy, have mucous too, kids had cough and cold in the house recently as well.  BOT with lymph node involvement, chemo and rads, no surgery

    Thanks

    Thanks for the answers it sure helps. 

    as already shared many loose a vocal cord. i did years post treatment. they called it paralized, said sometimes it comes back and doc said he has seen it happen even more than year later. surprizingly at 9 months later mine started to work again. that did not last long, as 6 months later it was gone again. was not bad but raspsy, two years plus later he said he would call it dead. that was somewhere 7-9 years ago. seems like every years it become slightly worse so not like some have shared it is difficult to get out more than 5 words in a sentence. 

    over the years i have many speach patholigists check me out. but recently i visited with a SP that deals with many head and neck patients every day. she told me before doing a swallow test that she felt the radiation burnt up the epoglotis so it stays open. the epoglotis is what covers the airway to lungs and vocal cords to keep from asperating. so when like me that does not work and you loose the use of a vocal cord then aspirating happens every time we swallow. then she added that the cords were damaged enough from radiation that i would not feel the aspirating but cough. which i do cough alot. she then said but we will not be certain until she did a swallow test.    

    3 weeks later we did the swallow test. the results were exactly the same as discribed above. so to add even if when not drinking or eating and we natually just swallow even though we do not have much moisture we aspirate on that. turns out there is nothing she can do to help. the epoglotis can not be fixed or replace. 

    3 weeks later i did have my fifth try at filling the dead vocal cord. First way is surgery, when they tried they could not bend my head back far enough along with mouth not opening much, both from radiation damage, they could not get the tube in to do surgery. any way 2,3,4 trys thru the neck from a local ent with needle to try and fill cord did not work. fifth try was a Loyola University, Chicago with a doc that does the needle thru the neck alot. he hit the cord on just the second stick. 

    results are amazing, my voice is somewhat stronger, i can now use about 8-10 words in sentence, i do not loose my wind when talking or walking, and best i am not aspirating as much. i still do and will with every swallow but sure seems like much less coughing. best yet is with all the larger amount of aspirating that was happening i feel my body/lungs where fighting to heal alot making me tired all the time. great news praise God that switch has turned on and am no where near as tired. 

    sadly the material they use is only temporary. they do that in case the high risk of getting material in the wrong place when trying to hit the vocal cords. if it were more perminate then if something went wrong it would be wrong maybe for the rest of our lives. i have the needle fill done in early may, sometimes it lasts 4-6 months and most of the time only 2-4. if it don't last i will have to choose to do it again the same way or risk a more perminate material with a much higher risk of problems. 

    now i will go back 6 years ago, after about 2 weeks of raspy and slowly loosing my voice, i lost it gone. I had a scope done days after. the though cancer was back. 3 days later they did a biopsy in the farnyx and turned out not to be cancer, thank God! what it was was Congronecrosis, which is dead infected skin. after 9 weeks of IV antibiotics 3 times a day, the addition of a trach, and 40 Hyperberic Oxygen treatments, it started to heal slowly. about 6 months later i finally felt somewhat recovered. still have the trach and will have for life but i am alive. 

    all part of the long long term of the side effects from radiation and some chemo. not fun. 

    so after being long winded, i suggest dclear14 that you seen your ENT soon and have a scope. it could be and probably is nothing but cold. but the question is.... it is worth the risk of waiting

    good luck

    john 

  • dclear14
    dclear14 Member Posts: 36
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    Thanks so much for all of

    Thanks so much for all of your insight and advice, it is very much appreciated. 

  • jackflash22
    jackflash22 Member Posts: 524 Member
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    Voice

    I lost my voice after rads, about a month after. I got up one morning and tried to speak and nothing came out except a squeak. Try as I might I couldn't get a word out, it lasted two weeks then frightened the life out of me when it suddenly come back full force...loud, then quiet, then broken like a boy in puberty. It soon settled down and I had no trouble after. The onc' said the radiation had gone very near my vocal cords. It's very frightening when you can't speak. I had to write on a board with chalk to communicate, the trouble is my partner is nearly blind and can't read so we had no communication except in charade form. I'd forget and leave him a message on the table when I went out to tell him where I'd gone then when I came home he'd ask me where I'd been or I'd write "can you hang the washing out" and when I came home it was still in the machine, looking back it was quite funny but wouldn't want it to happen again. The effects of radiation can keep rearing up a long time after treatment finishes usually minor ones. I was OK with my swallowing then gradually I had difficulty and now I can't swallow at all my throat is completely blocked, hopefully it will get sorted, I'm hoping no more surprises are along the way. Don't worry your voice will be back when it's ready.