long term side effects of radiation for head/neck cancer

yes you would think that doctors would have some kind of treatment for correcting an epiglottis, maybe plastic surgery or SOMETHING. I do not aspirate all of my food, but a lot and just keep waiting to get pneumonia again. I have so much trouble swallowing and eating anything but I keep trying and know some day I’ll pay for it when I get pneumonia. It kills me because not only can I not eat, my speech is getting worse and I cannot communicate, which is so frustrating, and I get mean at times because people can’t understand me. So I know what you mean about our lives being hell. I didn’t get my speech problem until 29 yrs after my first bout of radiation. Thank God! But my kids keep reminding me that I’m still alive and enjoying my grandkids and new great grandbaby, which is true. I feel so alone going thru this and wish I could find a support group in my area. This is my second go around with throat cancer and one time with breast cancer. This may sound crazy, but drs can put a tail on a dolphin, but can’t repair a throat!!! Thanks for letting me vent. Smp

SMP, I know exactly how you feel about feeling lonely. You can vent to me anytime . I live in the New Bern North Carolina area. If you live close we could get together and talk. Hopefully one day soon the doctors will wake up and do something for the Head and Meck Cancer survivors !! To live a halfway normal life again would be wonderful for my husband and me. Take care and prayers sent to you .

On May 20, 2018 2:10 PM Cootercoco wrote:

SMP, I know exactly how you feel about feeling lonely. You can vent to me anytime . I live in the New Bern North Carolina area. If you live close we could get together and talk. Hopefully one day soon the doctors will wake up and do something for the Head and Meck Cancer survivors !! To live a halfway normal life again would be wonderful for my husband and me. Take care and prayers sent to you .

Thank you for your response. I live in the Tampa, fl. Area. Your husbands epligottis must be much worse than mine. I hope mine doesn’t get any worse. I can only eat soft foods and have to wash it down with bottled water, not out of a glass. It helps to put a lot of olive oil or mayo on some foods. I do what I have to. I want to get this tube out of me and worry about pneumonia later. I am also looking into the possibility of getting a dilation done. I had 3 done the last time and it helped but my gastro dr would not do any more. The more often I try to eat, the better I eat. I’m trying to redeveloped my my swallowing muscles. After the last throat cancer, drs could not believe that I was eating anything. I refuse to give up. Good luck to your husband and you and many prayers sent your way. He is so lucky to have a caregiver. Smp

Hi! cootercoco, I too am a caregiver to a survivor of head and neck cancer. My brother is 65 years old. Since 2001, he has had 4 major surgeries. Removal of tonsils due to tonsillar cancer in 2000. In 2001 a lump appeared on the right side of his neck. He underwent 31 days of very aggressive radiation treatment. For many years he was cancer free and doing very well. In about 2011 he began to notice numbness and tingling in his right arm. He also began to have trouble swallowing, and quite often would aspirate. After many visits to many different doctors, he was diagnosed by a sports Dr. With brachial nerve plexopathy and a paralyzed vocal chord. Both of these were direct results of the radiation treatment. These continued to deteriorate until he lost most of the use of his right arm, and had to have a tracheotomy. That was in 2016. In June of 2017 he had to have a complete laryngectomy, and removal of his tongue due to a new tumor. They removed a large piece of chest muscle to rebuild the back of his throat, and build a "tongue". He recovered very quickly and was living by himself and caring for himself, mostly. In April of this year they found another cancerous lesion on the back of his throat. This time they removed about an inch of his esophagus and took a large piece of muscle from his right upper thigh to do reconstruction. He is healing well, and back home with me checking on him often. Luckily , he lives 3 doors down from me. I also have had my mother living with me for a year. Being a caregiver is difficult. I never know just how far to go before I am considered " hovering ". James is non-verbal, so I have to be very careful so not to make him feel helpless, but still be aware of his needs. It always helps to talk to someone who has been there, and yet I truly wish there was no one. I hate that your husband is going thru this. But, my prayers are with you.

My temper was bad on levothyroxine so I changed to Armour.  Helped tremendously.

On Sep 27, 2013 11:50 PM lornal wrote:

I had my 9th throat dilation yesterday.  It had been 8 weeks since the prior one, and ALL progress was lost.  In conjuction with the vocal cord/breathing problems popping in the last few weeks, the doctor is recommending a feeding tube - 6 years after treatment.  I didn't expect it, but he concerned with my choking on my meds, dehydration, and lack of nutrituion.

After discussing, we decided to do it - it will be done on Monday.

Honestly, this whole radiation scar tissue causing me problems years later caught me off guard.  Only this past April did I find out the radiation scarring never stops.

THe doc wants to get this in before he can't use the type he likes best.

I'm kind of looking forward to NOT having to stress out 2-3 times a day when it is time for meds!

I went to the doctor yesterday to find out that radiation scarring never stops.  I could not believe it.  I am 8 years out, but never gave up my peg tube.

Is it just me or does it seem this type cancer and treatment seem to have more side effects.  It sucks.

My brother had massive radiation in 2001. Has already gone thru what you are going thru now, and more. If we can help with info let us know.

On Jun 01, 2018 2:54 AM KLAllums wrote:

On Sep 27, 2013 11:50 PM lornal wrote:

I had my 9th throat dilation yesterday.  It had been 8 weeks since the prior one, and ALL progress was lost.  In conjuction with the vocal cord/breathing problems popping in the last few weeks, the doctor is recommending a feeding tube - 6 years after treatment.  I didn't expect it, but he concerned with my choking on my meds, dehydration, and lack of nutrituion.

After discussing, we decided to do it - it will be done on Monday.

Honestly, this whole radiation scar tissue causing me problems years later caught me off guard.  Only this past April did I find out the radiation scarring never stops.

THe doc wants to get this in before he can't use the type he likes best.

I'm kind of looking forward to NOT having to stress out 2-3 times a day when it is time for meds!

I went to the doctor yesterday to find out that radiation scarring never stops.  I could not believe it.  I am 8 years out, but never gave up my peg tube.

Is it just me or does it seem this type cancer and treatment seem to have more side effects.  It sucks.

RADIATION CANCER TREATMENT ,, NEVER STOPS  ,,,,O  WOW.I  CAN BELIEVE U NOW  ,,AS ITS BEEN OVER 2 YRS.  FOR ME NOW ,, AND I STILL HAVE MANY PROBLEMS ,, INSCLUDING SPEAKING CLEARLY ...

I'm 5 years out from tonsil cancer.  After surgery (no radiation or chemo), my epiglottis would not close.  I did about 4-5 months of speech therapy and that solved the problem.  Now the only side effect is a partially paralyzed tongue from the surgery, which has only slightly affected my speech.

How can people have such different problems to the same illness?  Putting in a PEG after 6 years seems like surrendering to a life on the tube.  I've had 14 dilations and as long as it works I'll never have a PEG again unless my life depends on it.  Maybe some Dr's don't like to do PEGS  Eating isn't enjoyable as before cancer but at least I don't have to diet!!  I'm 8 years out.