Newly diagnosed esophageal cancer. I have a lot of questions.

Posted by ssimpson111 @ssimpson111, Feb 11 8:37pm

My husband is 62 and in good health. A month ago he was short of breath. They checked his heart and it was good. His bloodwork showed anemia. We have seen gastroenterologist who found the tumor (6cm) arising from 10cm of Barrett's. CT scan showed nothing. No nodes, lesion or Mets. We went to get EUS at Mayo feeling somewhat confident. That didn't last long. The gastroenterologist at Mayo found what appeared to be 5 nodes involved. He goes back tomorrow for PET scan and I am terrified. We have had nothing but bad news. Has anyone experienced this crazy Rollercoaster of good news bad news and how did you do?

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@ssimpson111

We had a phone call with the surgeon last Friday. He said probably chemotherapy and then surgery. He would not discuss the FISH report. It's not in the chart. The nurse said the oncologist will go over that with us.

Now I am terrified of this FISH report. The surgeon said he was a candidate for immunotherapy. I hope the dreaded FISH report doesn't say the opposite.

Has anyone else been frustrated that they don't post results to the portal and refuse to discuss them?

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I wouldn't swear the FISH report. It is simple... your cancer is evaluated a few ways that will determine what treatments could be most effective. Usually we are evaluated by EUS, biopsies, and scans. Our initial staging is considered "clinical"... and so, if you are given an actual staging (many are not) it will have a little "c" in front... like for me, I was cT3N1M0. But what really matters is spread. If the solid esophageal tumor is truly confined to the esophagus... that's a good start. Because now surgery will most likely come into play. If there is already metastasis to distant lymph nodes, bones, or organs... then being declared stage 4 makes surgery much less likely. But remember... tumor biology showing HER2-Positivity, or high PDL1 values, or Claudin 18.2 positivity... are double edged swords. It may mean your cancer might be more responsive to certain immunotherapies... but it also means your cancer is more aggressive and faster growing.

What's important is to get chemo and radiation going soon... to begin kicking the crap out of your cancer... and get it ready for removal. Surgery is the thing that is most considered a chance at a cure. What is used in the neoadjuvant and adjuvant settings will vary depending on what is seen upon dx... and in post-op pathology.

I'll also visit you with a private message... to talk more immunotherapy.

Gary

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Stage one at the junction with the stomach. Surgeon is calling this wee for concent for surgery. No chemo or radiation.

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@v132077

This sounds almost identical to my diagnosis back in 2019. I was also 64 at the time. My Oncologist immediately started chemotherapy (7 rounds), and 32 radiation treatments with surgery a few months later. What a life changing experience. I got through all of this and have a few battle scars. You will get through this too. Stay strong. There will be good days, and bad days. I can’t emphasize enough the importance of exercising. You won’t feel like it and will need to push yourself. I have a wonderful wife who kicked me in the butt, and made me get off the couch and walk. My Son didn’t cut me any slack either. That’s one of the main reasons I am here today. Life isn’t perfect as I still deal with complications from the surgery every day, and will for the rest of my life, but I am still looking down at the sod.
Good Luck!! You will win this EC battle too.

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Tomorrow he goes for the PET scan. I’m a wreck all over again, worrying that our positive outlook could be readjusted. We’re hoping and praying for the best outcome possible. I know that after this comes treatment and I’m glad that is going to start, even as I’m nervous. My husband has been feeling really good and I know he won’t once he begins actively fighting this thing. His doc was hoping to do surgery right away but we’ll see if that’s possible.

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@emersonmoon

Tomorrow he goes for the PET scan. I’m a wreck all over again, worrying that our positive outlook could be readjusted. We’re hoping and praying for the best outcome possible. I know that after this comes treatment and I’m glad that is going to start, even as I’m nervous. My husband has been feeling really good and I know he won’t once he begins actively fighting this thing. His doc was hoping to do surgery right away but we’ll see if that’s possible.

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I just completed my third chemotherapy and my 12th Radiation treatment. I still have another full month of this regiment. Radiation 5 days a week and chemo 1 day a week.
When I first started, I was dealing with depression and anxiety, but then
I realized in order to survive. I needed to have a great and positive attitude. Moving forward I am thankful to our Lord for being diagnosed.
I was pretty depressed at first, but then I learned in order to get through this with any comfort Level and success I had to change my attitude. I now wake up each morning and thank Jesus for the opportunities that I have through our medical system, and the belief that the treatments will be successful.
Stay strong, stay positive, and only choose positive friends and family to comfort you. We're Stronger than you may think 🤔

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@alberton1

I've been at this for 8 months, exact sequence of events as you; you are an inspiration for me. Thanks.

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@alberton1, welcome. Do you have a confirmed diagnosis of esophageal cancer? What is your treatment plan?

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@colleenyoung

@alberton1, welcome. Do you have a confirmed diagnosis of esophageal cancer? What is your treatment plan?

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yes, 9/2024 esophogial/removal. RAd, chemo prior. Immuno now.

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My son is diagnosed with stage 1C esophagus cancer.he. is so confused after seeing surgeon and oncologist. Oncologist said radiation and chemo can get rid of it.
He was ready to start, .now the drs want to do surgery first. . It was caused by reflux, barrels esog.. I know removal of esophagus is recommended because of Barrets. Has anyone had just chemo and radition.?
I'm confused also.he don't want to hav surgery

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@golfngal

My son is diagnosed with stage 1C esophagus cancer.he. is so confused after seeing surgeon and oncologist. Oncologist said radiation and chemo can get rid of it.
He was ready to start, .now the drs want to do surgery first. . It was caused by reflux, barrels esog.. I know removal of esophagus is recommended because of Barrets. Has anyone had just chemo and radition.?
I'm confused also.he don't want to hav surgery

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I was stage 1 also and went straight to surgery. I would first recommend getting a second opinion if you have confusion on what you are being told.

Endoscopic submucosal dissection (ESD) could be a option I would ask about, it was brand new back when I had mine in 2010 so I didn't feel comfortable with it and had the surgery.

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@deepdive1967

I was stage 1 also and went straight to surgery. I would first recommend getting a second opinion if you have confusion on what you are being told.

Endoscopic submucosal dissection (ESD) could be a option I would ask about, it was brand new back when I had mine in 2010 so I didn't feel comfortable with it and had the surgery.

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Thank you for replying and information.
.
Did u have barrets esophagus also?
How much of the esophagus did they move? They want to remove 80 percent because of the barrets.

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@golfngal

Thank you for replying and information.
.
Did u have barrets esophagus also?
How much of the esophagus did they move? They want to remove 80 percent because of the barrets.

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Yes I did have Barretts and they took around 75+% of the esophagus. And I still have Barretts even after almost 15 yrs that they monitor annually.

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