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

Terrified is a good word. I get it. Everyone on this blog gets it. My heart goes out to the newly diagnosed. You're in a place where you don't even know what questions to ask. You will learn so much in the next few months. Lots of awful things are going to happen for you to get THROUGH this. Read a lot from this blog and others. You will find that no two cases are alike, but definately share some qualities. Doctors will try to tell you what to expect and how to overcome adversities from a boilerplate menu. People who have gone through it will have a different and have equal or better advice. You were just dealt a lousy hand, but It's what you have. Play your hand like a champ. There are so many winners here and so much love. We'll follow you on your journey and know that we are with you. You can do it. Hang in there.

Thank you so much. I have been reading the blog a few weeks now, and I honestly feel better when I do. There are lots of winners and long-term survivors.

I have worked in gastroenterology for a long time. When it is someone you love, your mind goes blank. I appreciate your reply and everyone who posts on this site. I have read many positive stories and they do help me when my mind wanders into dark places.

Terrified is the word. Dark places - I understand.

It was two years ago this Friday I had my first pet scan, and then met with the doctor the next day. Not knowing if I would be told to go home and die or be treated. Getting to the doctor's office was one of the longest walks I've ever had.

I was lucky. My doctors at Mayo had a plan with "curative intent." We hung onto those words for the next several months. To this day really.

Many would agree, I think, that the emotional/mental part of this terrible road is somewhat better when you have a plan after meeting with your doctors. Then, you can focus on that plan.

I had stage 3. Lower esophagus and two lymph nodes - "advanced localized" is what it was called.

I had two months of FLOT chemo and then 25 radiation sessions (with three more chemo infusions) and esophagectomy on August 3, 2023. Nothing easy or fun about it, but doable.

My ct scans since have been clean - no cancer. I did have a surgical complication that's not really relevant for you at this point.

It's a challenging road, very challenging. But, others have it worse. Hard to believe but true, we all know people in that even worse boat.

Your husband can do this, all of us here know he can. He may find another level of toughness he didn't know he had. I did. Determination and persistence.

The support your husband and you get from family and friends will be extraordinary.

And, believe it or not, there will be other "good things" that come from this battle. A whole new way of looking at the world. Perhaps a more thoughtful way.

Your road as a caregiver is so very hard too, also terrifying - and totally exhausting. Caregivers are angels, I think we'd all agree on that too.

Be kind to yourself. Take good care of yourself along the way.

Keep all of us in the loop, please. We're here to help however we can. Writing like this or by taking on the phone.

Gary

Thank you Gary. His PET scan showed regional node involvement but nothing else. He wants to start treatment ASAP. He is uncomfortable after he eats. His tumor is on one side of the esophagus and it has not went through the wall. PET scan did show severe atherosclerosis that we didn't know he had. He just passed a stress test and echo. I hope this doesn't hinder his treatment. His oncology appointment is a month away. I hope they move it up since he has his PET scan done. I am happy you have done well. It is encouraging to us.

I can relate. My husband is 64, has had issues with GERD, but started having trouble swallowing. They thought it was just narrowing of the esophagus but when they did the endoscopy they found a mass, that turned out to be malignant. That news is something akin to be hitting by a bus. He’s been healthy and active, doesn’t smoke or drink and eats pretty healthy. So far, he’s had a CT scan and the oncologist is optimistic, but he needs to have the PET scan before he sees a surgeon and I’m terrified all over again. Where we are right now seems like it could hopefully be manageable and my husband really needed that news (as did I) but now I’m worried about what the next step will show. The doc thinks it’s localized at the moment (some nearby lymph nodes are showing activity); praying he’s right.

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.

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

Zoom call starts soon... 9am Eastern on Sunday... 6am for me in California. Pop in if you have questions... just us EC patients helping each other. Calls are always 9am Sunday (Eastern)... and 6pm Wednesdays (Eastern)
https://us06web.zoom.us/j/4550284795?pwd=UjBHQ0J2V1pOc21SOExTR2N1UXNpQT09
Gary, 714 900 0791

My husband was diagnosed with esophageal cancer almost 1 yr. ago after going to ER due to vomiting. He described it that way. He was actually eating less and less due to an esophageal mass obstructing food and eventually liquids. His EUS showed a 2.5 cm mass distal esophagus. His PET scan had shown the same. But no mets and no + nodes. The team was optimistic that 35 radiation sessions and adjuvant chemo would work.He had a Jtube inserted for nutrition. It did indeed work and he had a great Pet Scan about 6 weeks after treatment. His J tube was discontinued . He had lost about 30 lbs. Jump to 3 month PET scan... It showed that he had liver metastasis and recurrence of original tumor that was tested as PDL-1 positive. The liver tumors are HER2 positive. He is not considered a candidate for surgery due to his other numerous co-morbidities. He is now back in treatment with chemo/Keytruda and Herceptin. The latter caused cardiomyopathy and was discontinued. That is where we are. Hoping for chronic care rather than terminal care. My husband is 74 and wasn't in perfect shape at onset. I hope your husband flies through this.

This is such a scary thing. It seems like you don’t know from one moment to the next what’s going to happen. I wish the very best things for you guys.