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I've been diagnosed with Esophageal SSC late stage 0

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  • I've been diagnosed with Esophageal SSC late stage 0

    and have been told theres nothing that can be done. Cant work it out. The esophagus is completely covered. Other than that, there's a tiny spot on the pet scan in one of the nodes behind the esophagus. No signs of cancer anywhere else. Doctors reasoning for it not being curable with surgery is my paralysis and lung capacity. Apparently my lungs capacity is only a quarter of what it should be. He thinks pneumonia will take me out after the operation if the operation doesnt take me out first. I'm T10 incomplete. starting chemo and radiation in the near future but will only prolong life. is my lung capacity really a limiting factor?
    Last edited by Mutley; 02-26-2019, 01:05 AM.
    Everybody wants freedom.... They just don't want it for everybody else...

    A college professor, a man I now consider my dad, once told me...
    "The minute you let someone decide what you can and cannot do, your life is no longer yours." A truer word has never been spoken in my opinion.


    Professor Bill Johnston
    (1930- )

  • #2
    I don't have an answer to your question, but I am so sorry to here this. I will keep you in my prayers. Hopefully others can chime in with more information.

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    • #3
      Originally posted by Mutley View Post
      and have been told theres nothing that can be done. Cant work it out. There's a tiny spot on the pet scan in one of the nodes behind the esophagus. No signs of cancer anywhere else. Doctors reasoning for it not being curable with surgery is my paralysis and lung capacity. Apparently my lungs capacity is only a quarter of what it should be. He thinks pneumonia will take me out after the operation if the operation doesnt take me out first. I'm T10 incomplete. starting chemo and radiation in the near future but will only prolong life. is my lung capacity really a limiting factor?
      Doctors reasoning for it not being curable with surgery is my paralysis and lung capacity.

      Have you seen more than one doctor about this...have you sought a second or third opinion?

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      • #4
        organising to make that happen.
        Everybody wants freedom.... They just don't want it for everybody else...

        A college professor, a man I now consider my dad, once told me...
        "The minute you let someone decide what you can and cannot do, your life is no longer yours." A truer word has never been spoken in my opinion.


        Professor Bill Johnston
        (1930- )

        Comment


        • #5
          Excellent plan. I will keep a good thought for you.

          Comment


          • #6
            It is hard to say whether you have that much of a diminished lung capacity without being tested. Your level of injury would suggest that while you may have some limitations, it would not be as great as someone with a cervical injury. I do understand his concern, but before knocking that option out, I would request a pulmonary consult and get a second opinion.


            Keeping you in my thoughts.


            ckf
            The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

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            • #7
              Go find that inspirometer they give us in rehab and get to work on that lung capacity while you search for a better doctor!
              T3 complete since Sept 2015.

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              • #8
                I'm T12 23 years. I am active but don't exercise.
                Two years ago I had a workup which included testing my lungs and their capacity. My capacity was nearly normal, so I'm wondering how the dr reached his conclusions.
                69yo male T12 complete since 1995
                NW NJ

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                • #9
                  Certainly post op pneumonia usually hits, and hits hard. I've fought thru double pneumonia ....now counting 8 times.
                  None was hardest than my first post-stabil surgery battle. It beat the shit out of me and certainly I must have been at my strongest physical condition at that point.
                  Now as I encounter each successive bout I'm told odds increase that my hospital discharge will see me exiting feet first.

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                  • #10
                    I can still take large breaths and I workout a couple times a week, but I cannot cough for jack spit. Had my first, post-injury cold a couple weeks ago and it sucked basically using that clear-one's-throat thing to get the phlegm out of my chest. Sorry, kinda off topic...
                    T3 complete since Sept 2015.

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                    • #11
                      Originally posted by Mize View Post
                      I can still take large breaths and I workout a couple times a week, but I cannot cough for jack spit. Had my first, post-injury cold a couple weeks ago and it sucked basically using that clear-one's-throat thing to get the phlegm out of my chest. Sorry, kinda off topic...
                      If you don't have one, ask your doc for a cough assist device. I ended up in the ER from the one cold I've had In 8 years as C7. I had almost blacked out twice from an inability to clear the phlegm from my throat. When I went home, the doc prescribed me a cough assist. It works for clearing my throat. Sorry for continuing the hijack, but this thing may save my life someday. Of course, that would depend on me clearing my throat preemptively (which I started doing for as long as the cold lasted) or being within quick rolling distance when I have the complete blockage.

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                      • #12
                        Originally posted by endo_aftermath View Post
                        If you don't have one, ask your doc for a cough assist device. I ended up in the ER from the one cold I've had In 8 years as C7. I had almost blacked out twice from an inability to clear the phlegm from my throat. When I went home, the doc prescribed me a cough assist. It works for clearing my throat. Sorry for continuing the hijack, but this thing may save my life someday. Of course, that would depend on me clearing my throat preemptively (which I started doing for as long as the cold lasted) or being within quick rolling distance when I have the complete blockage.
                        I don't think anyone would think you are hijacking this thread if you posted a link to the type of cough assist device you use. I searched the internet and found devices from around $50.00 to $1500. Wonder whether Medicare would pay for this device.

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                        • #13
                          Mutley: sorry to hear of your illness and hope you can get further medical advice. The lung precaution from the doctor seems strange.

                          gjnl: Medicare covered rental of my cough assist machine for one year, then ownership became mine. They may still do it this way.

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                          • #14
                            You may want to buy a pulse oxymeter for about 25$. This fingertip device measures how well you are oxygenating your blood. I am T-10 age 74 and I usually have a level of about 98%, comparable to most AB's. It would seem to me that if you do frequent checks and receive similar results that you are not compromised regarding pulmonary function

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                            • #15
                              Prayers coming your way Mutley.

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