New Guy

Dayle0928
Dayle0928 Member Posts: 1 Member
edited February 2024 in Esophageal Cancer #1

I was diagnosed with Esophageal Cancer last Monday. I'm a mess. Nightmare of care co-ordination with providers and insurance. How do I see the entire post of people who post? I see things like, "The most important thing you can do to survive is....."

And then gets cut off. Tips, suggestions, advice welcome. Thank you.

Comments

  • LimogesGuy
    LimogesGuy Member Posts: 18 Member
    #2

    I had the same problem. Posts just wouldn’t expand when clicked on. But the result seems to have remedied itself in the last hours.

    Anyway how you coping. We seem to be in the same boat.

    Little information waiting for treatment.

  • jwkelly
    jwkelly Member Posts: 26 Member
    #3
    https://csn.cancer.org/discussion/327629/new-guy

    I had immunotherapy when first diagnosed but insurance stopped it at the treatment center I used and the ew location wasn't close so I couldn't get it

  • NGC1514
    NGC1514 Member Posts: 46 Member
    #4

    "The most important thing you can do to survive is....."

    1. Get to an NCI-Designated Cancer Center (assuming you are in the US). https://www.cancer.gov/research/infrastructure/cancer-centers
    2. Follow the medical treatment plan exactly as it is laid out.
    3. Do not waste time or money on any alternative treatments: they do NOT work!

    I was diagnosed with Stage 2b adenocarcinoma with a 7cm tumor and 2 suspected lymph nodes on October 6, 2000; had 12 weeks of chemo, 4 weeks on radiation with chemo, and a transthoracic esophagectomy on April 9, 2001. The nodes proved to be non-cancerous on my post-op pathology report and I was downstaged to 2a.

    It is a crappy disease, but it can be beaten.

    Good luck

  • jwkelly
    jwkelly Member Posts: 26 Member
    #5
    https://csn.cancer.org/discussion/comment/1713238#Comment_1713238

    My entire esophagus has a tumor but my stomach feeding tube keeps me alive and gives me the nutrition I need. Mine is inoperable,can't tolerate any of the treatments either. I'm advanced stage 3b since December 2021. Good days and bad

  • Srinipartha
    Srinipartha Member Posts: 10 Member
    edited May 2024 #6

    Dayle

    Im just recovering from esophagectamy - I was diagnosed in October,23 with stage 3 Adrenocarcinoma and have gone thro chemo and radiation therapies -

    and also had my esophagectamy. It is curable - be strong. Please contact if you need to talk

  • mandarapte
    mandarapte Member Posts: 6 Member
    #7

    New Guy,

    I see your post is Feb 24. So that makes me the New Guy. I hope you are doing ok.

    Care coordination. Don't get me started. Cancer care or for that matter any medical care in the US is a mess. I went with the recommendations my providers gave me and I feel I got a bad deal/

    I have stage 3 esophageal cancer.

    I ended up changing providers and hospitals when things did not work for me. Only when I got a second opinion- and I saw what good care looked like did I realize what I was missing.

    Make sure you are with a big center that are doing this everyday and are well versed with patients needs. Do not hestitate to shop around.

    I agree with posts above. This thing can be taken care of medically speaking. But you need to make sure you have the right kind of care team . Not just the surgeon, but everyone else who will make you the priority, because there are lot of moving parts that need to be handled right as you go through this journey.

    I wish you all the best. .

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