Long Term without a Handbook

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Cboz
Cboz Member Posts: 1 Member
edited August 2022 in Esophageal Cancer #1

It seems like forever, I was diagnosed in 2013 and went through chemo/radiation the first quarter of the year with the inderstanding my treatment wouldn't be complete until I had an esophagectomy.

It took 3 years of constriction, aspirating almost weekly, and a daily battle with trying to eat anything, let alone enough carories for much more than existing.

I finally had surgery in Nov. of 2016, there were complications with breathing and I was sedated and on a vent for a week, in hospital for 3 weeks before I went home.

in the 3 years prior to surgery, my abdomen ached, just couldn't get comfortable. Post surgery, It was pretty much the same, throat constriction, I aspirate but not as much, and I have problems with (this is hard to explain) food being appetizing, there are times food, whether it's taste, texture, or feel, I can't force myself to swallow it. I have gone days without eating because my brain "refuses" to let myself swallow whatever it is.

I have an annual dialation EGD that consistantly shows inflammation but no cancerous tissue. I'm "cured"

Here's my issues; my surgeon prior to and after surgery would look at me like I was a liar and a drug seeker when ever I mentioned pain after treatment in 2013 was done. I felt almost ashamed for my symptoms. I have switched Doctorsand have a new esophageal doctor, I don't get the same look but I have the same pain.

IS this weird? Should I be fully recovered and leading a normal pain free life now? I don't work, I tried getting a job about a year after surgery but couln't perform the duties without more pain. It's hard going this many years. Does anyone else have any of the same issues?

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  • paul61
    paul61 Member Posts: 1,392 Member
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    I had my surgery about 12 years ago. I do still have pain periodically in my abdomen and my right chest area. Some days are better than others. I find I need to be careful what I eat and how much I eat but sometimes it just happens and I put up with it because I know it will pass with time. However on a scale of 1 to 10 I would put my level of pain at about a 4. It is irritating but not debilitating. I am back to a full active life but my first two or three years after surgery were not good. I am fortunate enough to be old enough to be retired so I don't have to worry about a full day of work when I have one of those "not so good" days. Many of us who have had this surgery have periodic pain after surgery for the rest of our lives.

    On the other hand if you feel your doctor is not paying appropriate attention to your discomfort then I would fire him or her and move on. Life is too short to put up with "uncaring" people. You should get the attention and comfort you need.

    Unfortunately, in the 12 years I have been active on various esophageal cancer forums, I have never heard anyone say, "After my esophagectomy and recovery I feel just as good as before I was diagnosed". They can't do a surgery this invasive without some negative long term effects.