Living life after treatment and surgery for Esophageal Cancer.

Posted by cbnova @cbnova, Feb 26, 2023

In December of 2020 I was diagnosed with stage 3 Esophageal Cancer. After chemo and radiation in February and March of 2021, I had surgery to remove the cancer in May of 2021. For me the surgery and recovery were probably the toughest part of the process. Not to say the chemo and radiation were easy, they were not but the changes the surgical part of treatments have changed my life from here on. Life after I got home from the hospital at first would not have been possible without a lot of help. Little things you take for granted such as showering or even walking about your home couldn't be accomplished without help. Those things got easier over time but it was a challenge. Getting use to having to sleep at a 30° angle because laying flat means anything in you new redesigned stomach comes up while you sleep(very uncomfortable and dangerous for your lungs). With the new design of your stomach food is also a bit of a challenge. They give you a list of foods you will probably be able to eat and a list of foods you probably should stay away from. With me I found after time that you have to try different foods and your body tells you quickly if you can or can not eat that again. You will also find portions you can tolerate will be much less than you were use to. This means you eat many more times per day. In the end it has been worth it for me because I have been cancer free on my 6 month scans so far . Another scan in a month which will be 2 years since surgery, I pray they continue to show me cancer free. If anyone has any questions on my journey so far please reach out. I have a friend who mentored me in my journey which helped tremendously for me. As I have said and believe since my journey started we are all" STRONGER TOGETHER "

Interested in more discussions like this? Go to the Esophageal Cancer Support Group.

Colleen Young, Connect Director | @colleenyoung | May 15, 2023

In reply to @stormyd "Thank you so much and we wish you all the best… but it sounds like YOU..." + (show)

Hi @stormyd, I believe your questions were in part directed to @bethm71. I'm also tagging @dsh33782 @snickers124 @cbnova and others for their perspective too.

Caregiving can be challenging when the person you are caring with doesn't wish to take their medications or follow doctor recommendations. Sometimes, it can help for them to hear it from the doctor or symptom managment nurse.

Which side effect concerns you the most? Has his ability to eat improved?

mason1616 | @mason1616 | May 15, 2023

In reply to @colleenyoung "Any update, @mason1616?" + (show)

Meeting with oncology this Wednesday

rikardlykling | @rikardlykling | May 19, 2023

I am having trouble swallowing after successful surgery. Any suggestions?Iam scheduled to go to USF in Tampa on June 7 hope it will help with esophagus expansion .God Bless.

manz | @manz | May 25, 2023

In reply to @doglover888 "I had surgery two years ago. I lost all my muscle and lost about 65 lbs...." + (show)

Having the same issues and know what your going through. Still trying to find the solution for me. Everything my oncologist and surgeon have recommended and tests, studies have not shown anything. Not any positive results anyway. Hang in there I’m sure our solution is forthcoming.

Colleen Young, Connect Director | @colleenyoung | May 27, 2023

In reply to @mason1616 "Meeting with oncology this Wednesday" + (show)

@mason1616, how did the appointment with oncology go?

@rikardlykling and @manz, if you haven't seen it already, you may be interested in this related discussion and suggestions by members:
- Anyone know of exercises or therapies to improve swallowing? https://connect.mayoclinic.org/discussion/therapy-for-swallowing/

rikardlykling | @rikardlykling | May 27, 2023

In reply to @colleenyoung "@mason1616, how did the appointment with oncology go? @rikardlykling and @manz, if you haven't seen it..." + (show)

No cancer Praise God.I have a appointment on June 7 with the swallowing center in Tampa to help me with that issue I have lost 40 lbs. but I was overweight

manz | @manz | May 28, 2023

In reply to @colleenyoung "@mason1616, how did the appointment with oncology go? @rikardlykling and @manz, if you haven't seen it..." + (show)

Thank you for referring me to this article. I like Mayo’s approach to issues and their team approach to finding solutions, Not finding my team doing this. I’ve went to a nutritionist who ranted on the small portions and multiple feedings. Every Dr. I’ve seen same thing.
I’m grateful for being 18 months cancer free, I understood this concept the first time I heard it and put it into practice then and still today. I know there is other solutions out there but pills and portion control is not working!! Multiple EGDs and I haven’t had to have my esophagus stretched or opened not needed. I’ve quit using the word disphlagia to any of my team, although my symptoms feel like food is hanging up it isn’t. So many people’s stories here are a part of my problem but never hear enough to say aha that’s it. I’m really at a loss of who to see or what to try next.

mason1616 | @mason1616 | May 28, 2023

In reply to @colleenyoung "@mason1616, how did the appointment with oncology go? @rikardlykling and @manz, if you haven't seen it..." + (show)

I received 2 radiation treatments, and one chemo treatment, this last week. Feeling a little fatigue and a little trouble sleeping.

manz | @manz | May 28, 2023

In reply to @mason1616 "I received 2 radiation treatments, and one chemo treatment, this last week. Feeling a little fatigue..." + (show)

Hoping the rest of your treatment goes as well!! My treatment was almost 2 years ago and all I experienced was nausea and tiredness. Stay positive and know you’re in my thoughts and prayers. You got this!!