10 years post-radiation Pain??

Mbeth1234
Mbeth1234 Member Posts: 3
in Head and Neck Cancer #1
Hi everyone. My 78 year old father is a 10+ year survivor of throat cancer with treatment consisting of chemo and 33+ radiation treatments. Within the past year or so he began complaining of pain in his throat, difficulty swallowing and episodes of coughing. No tumors were found during diagnostic tests although he has a fair amount of scar tissue in his throat and some stricture as well as a nonfunctional salivary glad. A swallow study showed some aspiration.

Bottom line is this...doctors cannot find a physical reason for the pain. My father said the pain increases as the day goes on and he has very little during the morning when he swallows but most in the evening.

Does anyone have any experience with this or any suggestions on how to help him?

Thank you.
Marybeth

Comments

  • fisrpotpe
    fisrpotpe Member Posts: 1,349 Member
    #2
    I must first
    First I must ask you send congrats to your father for surviving 10 plus years. Being 78 he could be my mentor as I could only wish I will be around when I get that age. I am 53 with 15 years of survivorship and feeling 68. I have much respect for your father to be able to win the fight and then survive that is amazing.

    To answer your question. I difficulty swallowing for a long time but I certainly see it getting harder as the years go on. I too cough alot more now over the last several years with some aspiration.

    I too have had the swallow test and the speech pathologist suggest that when I swallow that I add a swallow after I feel all is down. This helps pull the liquids down and helps cause less aspirating. I found this to help no doubt. They also suggest that you sit up very straight and not lean back when eating or drinking. After eating stay as up right for 20- 30 min. after.

    Over the last couple years I have learned only to eat what swallows easy. Not to try things I know will not work. Soft is best. I do not eat much meat at all.

    Have he had his throat been dilated? I have not had this done and was not an option 14 years ago. I know many who have and seems to help. 2 years I had a real hard time and they found radionecrocis on my pharynx and I was swelled up. This is a long tern side effect from radiation. It is dead skin that is infected. After IV and HBO treatment and 8-10 months later I was on my way to doing better.

    I would make sure they keep on looking and following up.

    I hope this helps somehow.

    I am proud of your father. Again congrats!

    John
  • Mbeth1234
    Mbeth1234 Member Posts: 3
    #3
    fisrpotpe said:

    I must first
    First I must ask you send congrats to your father for surviving 10 plus years. Being 78 he could be my mentor as I could only wish I will be around when I get that age. I am 53 with 15 years of survivorship and feeling 68. I have much respect for your father to be able to win the fight and then survive that is amazing.

    To answer your question. I difficulty swallowing for a long time but I certainly see it getting harder as the years go on. I too cough alot more now over the last several years with some aspiration.

    I too have had the swallow test and the speech pathologist suggest that when I swallow that I add a swallow after I feel all is down. This helps pull the liquids down and helps cause less aspirating. I found this to help no doubt. They also suggest that you sit up very straight and not lean back when eating or drinking. After eating stay as up right for 20- 30 min. after.

    Over the last couple years I have learned only to eat what swallows easy. Not to try things I know will not work. Soft is best. I do not eat much meat at all.

    Have he had his throat been dilated? I have not had this done and was not an option 14 years ago. I know many who have and seems to help. 2 years I had a real hard time and they found radionecrocis on my pharynx and I was swelled up. This is a long tern side effect from radiation. It is dead skin that is infected. After IV and HBO treatment and 8-10 months later I was on my way to doing better.

    I would make sure they keep on looking and following up.

    I hope this helps somehow.

    I am proud of your father. Again congrats!

    John

    John,
    Thank you for your
    John,

    Thank you for your reply. I now have an avenue to begin searching because all other possibilities have been exhausted - - radionecrosis has not been discussed as a possibility. My father has had his throat dilated, but as you know that is risky. Once or twice at the very most is recommended due to risk of perforation.

    My dad eats much the same way you do. He eats mainly soft foods with very little meat. I recently obtained some Benecalorie supplement for him as he has been losing weight because of anxiety as well as the pain in his throat.

    My prayers will be with you for continued health and cancer-free living. I admire your strength and courage as well.

    Best wishes.
    Marybeth
  • fisrpotpe
    fisrpotpe Member Posts: 1,349 Member
    #4
    Mbeth1234 said:

    John,
    Thank you for your
    John,

    Thank you for your reply. I now have an avenue to begin searching because all other possibilities have been exhausted - - radionecrosis has not been discussed as a possibility. My father has had his throat dilated, but as you know that is risky. Once or twice at the very most is recommended due to risk of perforation.

    My dad eats much the same way you do. He eats mainly soft foods with very little meat. I recently obtained some Benecalorie supplement for him as he has been losing weight because of anxiety as well as the pain in his throat.

    My prayers will be with you for continued health and cancer-free living. I admire your strength and courage as well.

    Best wishes.
    Marybeth

    I know
    I know just here where I live there are 3-4 people who have had many dilations. The doctors here believe a little bit at a time and it seems to be working. I know a friend in Iowa who had his 13-14 earlier this week.

    Please keep us up to date on how your dad progress is.

    Johnn
  • Mbeth1234
    Mbeth1234 Member Posts: 3
    #5
    fisrpotpe said:

    I know
    I know just here where I live there are 3-4 people who have had many dilations. The doctors here believe a little bit at a time and it seems to be working. I know a friend in Iowa who had his 13-14 earlier this week.

    Please keep us up to date on how your dad progress is.

    Johnn

    Hi John,
    Thanks again for
    Hi John,

    Thanks again for the info. I'm surprised, but happily, that so many dilations can be done. That's certainly encouraging!

    My dad has an appt on Monday to discuss this new information. I do believe he is motivated and exhibits less anxiety than he had been before I told him about this message board. I wish he would learn to use the computer so he could do this himself and share his experiences. Oh well...one step at a time :)

    I will keep you up to date on his progress.

    MB
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #6
    Mbeth1234 said:

    Hi John,
    Thanks again for
    Hi John,

    Thanks again for the info. I'm surprised, but happily, that so many dilations can be done. That's certainly encouraging!

    My dad has an appt on Monday to discuss this new information. I do believe he is motivated and exhibits less anxiety than he had been before I told him about this message board. I wish he would learn to use the computer so he could do this himself and share his experiences. Oh well...one step at a time :)

    I will keep you up to date on his progress.

    MB

    I had one dilation
    I had one dilation pre-cancer and two post cancer. I remember when I had my first I was 39 and when I had my swallowing study and my drs appts every one just kept saying they were suprised at my problem swallowing because usually older people end up with that issue. The two I had after were because I have a stricture from radiation damage. It was so bad I couldn't even swallow yogurt.

    I am still not perfect but I can eat on my own now. No meats tho, can't seem to swallow them, but otherwise I am doing pretty well now.

    They had to wait for me to heal after radiation before they did the stretching. They took me from less than 2mm to 9mm. At that stage I still couldn't swallow normally. I could manage yogurt and shakes at that point. Then they did it again. I'm not sure now much they stretched me to the second time. They would rather do it in stages as they don't want to rip or tear anything.

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