Update on swallowing problem

jackflash22
jackflash22 Member Posts: 524 Member
in Head and Neck Cancer #1

At my last check up I was shown a photo of my blockage in my throat the feeding tube part of it, it's fully closed. The surgeon said it was the radiation and in rare cases this can happen. My options we're wait a few months to see if it would improve as they think it could still be swollen if not to go through my peg tube and up to the blockage to view from the other side or surgery. My question today is surgery after radiation, I've heard it's difficult and may not heal because radiation damages tissues. Is there anyone who has had surgery to unblock after radiation and how did it go. I had the same thing from the dental surgeon with the scarring inside my cheek (resulting from skin flap taken from my cheek to repair tongue) the scarring is bad and I bite into it several times a day and it bleeds. The surgeon said if he cut back the scarring I'd probably scar again just as bad and it maynot heal again because of radiation. They could take out the teeth but again that's risky because of ORN. It's like a no win situation whatever I decide. I'm now  7 months after rads and would have thought skin tissue would have repaired itself by now or does it never get back to the same after rads. The speech therapist phoned me this week and said not to give up as she has had patients swallowing again after 10 months post rads. She wants me to go to a meeting place where H&N folk meet to share their experiences. I'm not depressed about these problems just confused. I have a MRI scan on Friday so hopeful alls clear on the cancer front. it's my first since treatment which started nearly a year ago. Since rads I'v used a peg tube, my hearing in my left ear has gone, my scars in my mouth, a pain in my arm on the side of dissection it hurts too much to use it for long and I can't lift it above a few inches, tiredness and fatigue, a lop sided leaky mouth,I'm having the bottom lip botoxed to get a symmetrical smile,I've read that H&N  cancer is the worst for side effects and physical appearance. This all sounds a lot of moans for having my life saved but alls not bad I paint watercolours, belong to a club, go for walks and with summer coming looking forward to weekends away. Another question is being in the sun I like to get a tan is it safe to sit in the sun for short times, I cover up once I feel too hot.

Comments

  • Hondo
    Hondo Member Posts: 6,636 Member
    #2
    Hi Jackie

     As you know I lost my ability to swallow too about two years ago and everything I eat now must go through the PEG tube. I am afraid of any type surgery or to do anything in the area I had the radiation because all it does is to make things worse than it was before. I had one tooth pulled 8 mounts ago it did heal OK but he had to stretch open my Jaw a little more than normal while I was under. Now I can’t open my mouth but ½ inch, it is always something, I just hope you have better doctors then I had.

     

    PS: Remember I had Radiation twice to the same area on my face, so my flesh is twice dead.

    Will keep praying for you

    Tim Hondo    

  • fisrpotpe
    fisrpotpe Member Posts: 1,349 Member
    #3
    preception

    the preception for Head and Neck Cancer Support Groups is that it is about only the mental or depression part of the cancer. for me who has been in local group for 6 years  after not having one available for the first 12 years post diagnosis that preception is totally wrong. it certainly can and is part of the discussion. however in the group of 10-15 most of the discussion is about problems and experience that the doc's and nurces do not know and follow. information from those dealing with problem and what they do to deal with it is best heard from those who have been thru it. 

    i suggest you try the group i like to call Head and Neck Round Table Disscusion Groups. most are there to help others get thru easier what they already have found. 

    john

     

  • jackflash22
    jackflash22 Member Posts: 524 Member
    #4
    Hondo said:

    Hi Jackie

     As you know I lost my ability to swallow too about two years ago and everything I eat now must go through the PEG tube. I am afraid of any type surgery or to do anything in the area I had the radiation because all it does is to make things worse than it was before. I had one tooth pulled 8 mounts ago it did heal OK but he had to stretch open my Jaw a little more than normal while I was under. Now I can’t open my mouth but ½ inch, it is always something, I just hope you have better doctors then I had.

     

    PS: Remember I had Radiation twice to the same area on my face, so my flesh is twice dead.

    Will keep praying for you

    Tim Hondo    

    Swallow

    hi, I'm in that frame of mind at present, I'm comfortable and don't want to have more problems, I'm not minding the PEG tube I have got used to it and seeing people eat don't bother me. I'm beginning to wonder if I want to eat again all that chewing and indigestion. My ensure is instant and meals are over and done with, with little trouble. I never get hungry and I'm getting a balanced diet my weight has stayed the same around the 10 stone mark. When I try taste on my tongue it doesn't taste as good as I remembered. If it wasn't for biting the scarring in my mouth I would consider myself normal. I wouldn't have been saying this in the beginning but like everything you do get used to it. 

  • Ladylacy
    Ladylacy Member Posts: 773 Member
    #5
    Swallowing

    My husband first underwent radiation and chemo for laryngeal cancer.  It didn't work and he had surgery to remove his larynx.  During this surgery they found out that his throat was closed due to radiation damage and they had to reconstruct his throat.  He healed great the specialist said and he was able to swallow once again.  But a year later they found a second primary at the cervical of his esophagus and they ruled out surgery.  He underwent another 37 rounds of radiation and chemo.  His throat once again closed off but the specialist was able to open it without any problems this time.  He had talked about going up thru his feeding tube and then down the throat at the same time, but it wasn't needed.  Today it doesn't make any difference because he can't swallow at all due to the second primary.  He has been on a feeding tube for two years.

    Surgery was ruled out when the second primary reoccurred and he had a spread to his right lung.  I think surgery was ruled out because all radiation was in basically the same spot and of course the spread.  You also talked about hearing loss and that is something my husband has experienced also.  

    Wishing you the best -- Sharon

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