We are from Canada and my husband was just diagnosed yesterday.

Posted by beckydm @beckydm, Jul 28, 2023

My husband was just diagnosed yesterday. We are currently still in the staging process and trying to get all the tests done. How do we even go about a 2nd opinion to a mayo clinic?

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justtrust | @justtrust | Sep 17, 2023

In reply to @colleenyoung "Welcome Canucks! @justtrust, are you and your husband still going through the diagnostic process? Do you..." + (show)

Hi Colleen,
We now have a diagnosis and prognosis.
It’s Stage 4 esophageal cancer. Poorly differentiated adenocarcinoma (it’s crazy that my predictive text knows these words; I’d never dreamed that could happen to us). It’s terminal. He’s begun chemo and immunotherapy. His first cycle went well (so far) with minimal side affects. I’m exploring molecular hydrogen as well.

Our medical team is great; however, it sucks to live in a place where it took them 5 months to even get the diagnosis. Further, the radiologist made a major error in March that significantly delayed the process.

dave640 | @dave640 | Sep 18, 2023

Hi Justtrust.
Re your statement, "It’s terminal." I would encourage you to post, additionally, on SmartPatients.com. There are well-informed Stage 4 survivors there, who will share their experience and insights with you.
Dave

mrgvw | @mrgvw | Sep 18, 2023

In reply to @justtrust "Hi Colleen, We now have a diagnosis and prognosis. It’s Stage 4 esophageal cancer. Poorly differentiated..." + (show)

Terminal? Ok, I know what the data says... things ain't looking good... but I'm stage 3, and I did the whole schmear of j tube, chemo, radiation, esophagectomy, and immunotherapy. Yes, maybe I'm in the group that says 20% of us will make it to 5 years... but big whoop... here I am, still going. We shall see. I'm only just over 3 years post-op, a long ways to go... no guarantees for any of us. Can he even get to surgery? Probably not... but hey, I've seen many stage 4's get to surgery. But first things first. We need his body and cancer to have a great response to treatments... whether chemo, immunotherapy, or radiation.
Gary

Colleen Young, Connect Director | @colleenyoung | Sep 28, 2023

In reply to @justtrust "Hi Colleen, We now have a diagnosis and prognosis. It’s Stage 4 esophageal cancer. Poorly differentiated..." + (show)

@justtrust, hearing that your husband has stage 4 cancer is a tough blow. But there are many here to tell you that one can LIVE with esophageal cancer. @naomicanada, can tell you about her mom. Also meet @ravyn @sjw6358 @eterry and @lori57216

See this discussion started by @grac3honolulu
- Immunotherapy for Stage IVA SCCA of the middle esophagus
https://connect.mayoclinic.org/discussion/immunotherapy-for-stage-iva-scca-of-the-middle-esophagus/
You're not alone. We're here with you.

What chemo and immunotherapy has he started?

johnstawicki | @johnstawicki | Sep 29, 2023

Check into immunotherapy before moving forward , I let them start it only to find out after 3 treatments and some bad side effects , it only was 15% effective .so I stopped it and alll side effects went away …

justtrust | @justtrust | Oct 1, 2023

In reply to @colleenyoung "@justtrust, hearing that your husband has stage 4 cancer is a tough blow. But there are..." + (show)

Thank you, Colleen.
He’s on FOLFOX and Opdivo (nivolumab).
He had his first cycle. He was meant to start his 2nd cycle this past week, but it had to be pushed back because his immune system needed more recovery time.

justtrust | @justtrust | Oct 31, 2023

Well, a little update, in the past month, my husband has went from completely liquid diet to eating whatever he wants (more slowly than “normal” and chewing really well). The change feels incredibly drastic.
2 to 3 more cycles of treatment (FOLFOX, though adapted to remove some elements) & Opdiva.
After these 2-3 more cycles, then a CT scan. After that, I guess, they reassess the plan and continue treatments.
I hear people talking about NED and I’m wondering how common that is for Stage 4 esophageal cancer. . .after these treatments.