Six months after my last treatment and still having trouble swallowing

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Johnny Mac
Johnny Mac Member Posts: 2
in Head and Neck Cancer #1
Hi everybody! This is my first post here so nice to meet all of you. I was diagnosed with baser of tongue cancer last November. I went through the 35 doses of radiation and 7 chemo sessions. February, March and April were pretty brutal, but I feel 100% again from the shoulders down.
My biggest complaint is I still can't swallow well. I can take a sip of water and it will take 10-12 swallows to get it down and there is still some residual. I apparantly have a restriction from scar tissue about an inch above the epiglotis. So the swallowing mechanics are working, but the restriction is preventing material from gettting there.
The doctors are at odds as to what to do. I have a small airway to begin with so it's very difficult to intubate me. This makes any kind of surgery almost impossible.
Anybody have a similar situation and what are you doing about it?
Thanks and I hope everybody is doing as well as I am.
Cheers!
Johnny Mac

Comments

  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #2
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    Hi Johnny
    Sometimes it takes awhile to put out all the brusgfires ignited by these treatments. So we have to be persistant. First, I am wondering if you have had a barium swallow test yet, thereby proving this swallowing problem is from narrowing, not swallowing dysfunction. Second, if they are considering surgery, exactly what kind of surgery is being entertained? There are several ways to do anesthesia despite a narrowing which prohibits intubation. Have you had a formal consultation with anesthesiology, and exactly what didmthey have to say. Feeling good from the neck down I can identify with. The rest will follow, vut it may take some time.


    Pat
  • ToBeGolden
    ToBeGolden Member Posts: 695
    #3
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    Glad to meet you
    Glad to meet you. My challenges are different enough that I don't have any advice. But we all eventually come to terms with our new bodies. Our new bodies are never as good as the ones we were born with (ain't that the truth); but they are adequate to get us through the rest of our lives. Sorry, you caught me in a philosophical day. Rick.
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #4
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    Welcome JM...
    Can't really offer anything as for the strictor, but a few on here have ha similar experierences and will chime in soon I presume.

    I was STGIII Tonsils, also 35 rads and sixteen weeks of chemo.

    I have recovered pretty much back to normal, though I'm over three years post Tx, and it took all of two years to get 100% of taste and around 95% of the saliva back.

    No problems with the swallowing.

    Out of curiosity, did you have a PEG or feeding tube during treatment?

    Again, welcome...

    Best,
    John
  • hwt
    hwt Member Posts: 2,328 Member
    #5
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    Skiffin16 said:

    Welcome JM...
    Can't really offer anything as for the strictor, but a few on here have ha similar experierences and will chime in soon I presume.

    I was STGIII Tonsils, also 35 rads and sixteen weeks of chemo.

    I have recovered pretty much back to normal, though I'm over three years post Tx, and it took all of two years to get 100% of taste and around 95% of the saliva back.

    No problems with the swallowing.

    Out of curiosity, did you have a PEG or feeding tube during treatment?

    Again, welcome...

    Best,
    John

    Another opinion
    Wish I could help but I haven't had that issue. Have you sought other professional opinions? Wish you the best!
  • George_Baltimore
    George_Baltimore Member Posts: 303
    #6
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    hwt said:

    Another opinion
    Wish I could help but I haven't had that issue. Have you sought other professional opinions? Wish you the best!

    stricture?
    I'm not sure why the doctors are at odds about what to do about your problem. From the way you describe it, it sounds like you have a stricture due to the radiation. I didn't start having stricture and swallowing problems until 3 years after treatment stopped. If indeed you do need dilated (stretched), you don't have to be intubated. It's a relatively simple procedure that takes about 15 to 20 minutes in an outpatient basis. They use a nasal cannula that just sits at the entrance to your nostrils for oxygen, they put you out (usually with Propofol), and 15 to 20 minutes later, you wake up with a sore throat that lasts anywhere from 1 to 4 days depending on how much they had to stretch.

    As Pat said though, you probably should have a swallow function test before this is done to rule out anything else that might be causing it. Good luck. If you have any further questions, don't hesitate to ask.
  • bjw1955
    bjw1955 Member Posts: 67
    #7
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    glad to meet

    Glad to meet you I agree with everybody that getting a complete barium swallowing test would be helpful and then again it could be one of the bad side effects of cancer and your neck is still swoolen from the rads and after that get a consult for speech therapy to strengthening your neck muscles with exercises bjw1955

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