What a journey!

DesertHykr
DesertHykr Member Posts: 3 Member
in Esophageal Cancer #1

I was diagnosed 9/11/2018. After two rounds of chemo and one radiation, my cancer has neither grown nor disappeared. I am now again, six years and three months later, seriously considering an esophagectomy. I am fearful, yes. But more than that, I consider such as invasive procedure to be an affront to my body. Does anyone relate to this perspective?

Comments

  • Twine
    Twine Member Posts: 18 Member
    edited January 2 #2

    See my earlier posts. I don't know so much about 'an affront to my body' so much as an 'affront to my psyche' and a challenge to my courage, I don't like hospitals and pain and sickness of any sort (i.e. I don't tolerate morbidity too well) though I'm a veteran. I'm nearly two years from diagnosis of adenocarcinoma but I may have actually had it for four years since I was reluctant to visit hospitals during Covid and even when I did follow up my symptoms, I was sent first down the ENT then 'respiratory' routes before I hit the Upper GI trail

  • DesertHykr
    DesertHykr Member Posts: 3 Member
    #3

    Thanks for being my first respondent!

    is this your esophagus? Are you in treatment?

    My boyfriend acknowledged for me that it is an affront, violence to my body … but done in an effort to reduce later violence, like an amputation.

    I have no problems with dying … my morbidity does not scare me in the least. In some ways, that works against me! I volunteer with an organization that provides access to Medical Aid in Dying, so I have now seen a lot of death. What scares you about dying?

  • Twine
    Twine Member Posts: 18 Member
    edited January 2 #4

    Nothing really scares me about dying and the major reason is that I'm not religious. I was lucky that I had these particular circumstances making a very difficult gamble possible. So, no operation and no treatment other than endoscopies and biopsies that are now getting more spaced apart. I might still develop another tumour of course but I can't make decisions based on that.

  • Twine
    Twine Member Posts: 18 Member
    edited January 2 #5

  • DesertHykr
    DesertHykr Member Posts: 3 Member
    #6

    ah, so you have no tumor now…. ?

  • mandarapte
    mandarapte Member Posts: 6 Member
    #7

    I had to think a little about my esphagectomy.

    I was diagnosed April 24. Could not swallow. Invasive squamous cell CA.

    Underwent radio chemo. Tumor resolved on imaging. Meanwhile, had a complication with my j tube. Big mess. Abscess, fistula had to have it removed, went on TPN. Delayed my surgery. I 'tranisitioned' out of the surgery window and the providers decided to wait and watch. Things were looking good. Eating, gaining weight and all that. 6 months later EGD showed residual CA on biopsy. Now suddenly surgery is on the cards.

    I had the same thoughts. After months of suffering - not swallowing, not eating etc, I am now able to do verything normal. But the CA is still in there. The temptation to keep my life going 'normal' was huge. But I know this thing will kill me if ignored. In spite of all the hardships and life style changes post surgery, the possibility of continuing life (however limited it might be) is still better than not being around at all.

    Don't get me wrong. I went through J tubes, TPN etc at home. Multiple procedures to take care og the abcesss in my abdominal wall etc etc. I feel recovery from the big surgery can't be any worse than that.

    So I decided to go for it. It's this week. For better or for worse, I am taking the plunge.

    PS: I totally binged on food and drink over the holiday season. While I still could eat and drink some what like a normal person. Now I am ready for whatever comes.

  • LimogesGuy
    LimogesGuy Member Posts: 18 Member
    #8

    I had my esophagectomy on the 8th of July 2024. The memories are starting to fade away and I almost eat and sleep regularly again. Just smaller portions. And in a tilted bed.

    Glad I had the surgery. Just a few immunotherapy sessions left to complete.

    Next scanner appointment in March.

  • mandarapte
    mandarapte Member Posts: 6 Member
    #9

    I am glad to hear that.

    Yes, softer diet, smaller portions. I can live with that . I did that when I was first diagnosed. The regurge and tilted sleeping. That I will have to learn to live with. I have sleep apnea, so sleep is a challenge already.

    And yes, even after surgery, I will have to do immunotherapy.

    I am glad you did not have any complications from the Sx. I am told these are common. But it is what it is.

    You mention your scan coming up. Thats another reality one has to live with. Even with surgery with curative intent, nothing is guranteed. Regular follow up and tests. It is the sword of Damocles.

    Going into Sx this week.

    I hope things keep getting better. Till then we live one day at a time.

    Happy New Year 2025!

Discussion Boards