1. < Esophageal Cancer

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.

doglover888 | @doglover888 | Mar 6, 2023

Hi there. The shake sounds delicious. I will make one and I'm sure I'll like it. I had the same surgery as your husband 2 years ago. It's been a long road but I am getting better. Your husband has to stay positive and day by day things get brighter. Thanks for the recipe. Can't wait! Take care.

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cbnova | @cbnova | Mar 19, 2023
In reply to @doglover888 "Hi. Before cancer I was healthy, active, tom boy, muscular for a woman and proud of..." + (show)
@doglover888

Hi. Before cancer I was healthy, active, tom boy, muscular for a woman and proud of it. Losing all this weight and not being active is really difficult for me. My surgeon didn't really have an answer for me as to why I couldn't gain weight. I researched it and found an article in a British paper about my issue. Turns out there are lots of cancer patients suffering my problem. It seems that stomachs which have been stretched due to the esophagus being removed is the reason (they think). I will just have to read for updates and hope there is a cure.

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I'm a two year Esophageal Cancer survivor. In the time since surgery I have learned much about how and what I can eat to maintain weight. What I have been able to do is find foods that I can eat and eat them in small portions much more frequently than typical meals. I eat something every couple hours. I try to find things that are higher in calories without too much sugar in them. My diet is kind of boring but I am maintaining weight so that is good. Everyone's body is different so you will have to find what works for you.

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manlybythesea57 | @manlybythesea57 | Mar 20, 2023

It’s a common problem- I’m 4 years post surgery / chemo / radiotherapy - was fortunately diagnosed as Stage 2 - it is an ongoing challenge to maintain weight - I’ve permanently lost about 12 kilos including muscle mass & strength My digestive process has never recovered to pre-diagnosis - I eat 6 times a day but much of my intake is not fully processed & moves rapidly through my GIT & my daily motion expunges a kilo of faeces

It’s a matter of learning to live within these restrictions I can’t surf like I used to I carry snacks every time I leave my apartment
I also take digestives enzymes with each major meal

But I am grateful for my medical team & the resilience I have developed along the journey

And I still dream of riding my surfboard

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doglover888 | @doglover888 | Apr 2, 2023
In reply to @dave640 "@doglover888, would you say that your appetite has been significantly less ever since your operation? Or..." + (show)
@dave640

@doglover888, would you say that your appetite has been significantly less ever since your operation? Or do you have a good appetite but not the ability to digest enough food during the course of a day?
Or do you eat plenty to maintain or gain weight, yet you lose weight nonetheless?
Whichever might be the case, I know it’s been hard. Thank you for sharing your experience with us.

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Hi there. It's been 2 years now. My appetite is better, although I never have the hunger growls anymore. Weird. I just have to assume I'm hungry. I'm afraid to eat something different because it could upset my stomach and will cause me to aspirate that night and my episodes are getting fewer. So I'm caught between a rock and hard place. I still can't gain any weight but hoping soon that will change. Down to 85 lbs now. Onwards and upwards!

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dave640 | @dave640 | Apr 2, 2023

Thank you for sharing that with me/us. Good luck!

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1 reply
doglover888 | @doglover888 | Apr 2, 2023
In reply to @dave640 "Thank you for sharing that with me/us. Good luck!" + (show)
@dave640

Thank you for sharing that with me/us. Good luck!

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Good luck to both of you.

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Shanda Blackmon, M.D., M.P.H. | @ShandaBlackmonMD | Apr 3, 2023
In reply to @colleenyoung "Welcome @cbnova, this is a great topic to have started. I can see that you benefited..." + (show)
@colleenyoung

Welcome @cbnova, this is a great topic to have started. I can see that you benefited from the mentorship of a fellow esophageal cancer survivor and now you'd like to pay that forward. What better place to do that but here where many members can share their tips and experiences and support.

I'm tagging a few members like @afterthetreatment @sjw6358 @dave640 @katoosh @naomicanada @lori57216 @pellaw @survivorsuz @puprluvr @sjw6358 @ajfromchicago @kissingrhino @esop @socalkelly to join in.

What top tip would you share with someone new to esophageal cancer or in treatment or in recovery? What do you wish you had known?

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My main advice is to stay connected to a survivorship program, ask questions, eat smaller and more frequest meals, avoid sugar, separate food from drinks, weigh yourself daily, keep a food diary to learn what works- color code foods that don’t go well.

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mason1616 | @mason1616 | Apr 23, 2023

Where was your cancer located? My cancer is in the GE junction. Just got diagnosed a couple days ago.

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2 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | May 4, 2023
In reply to @mason1616 "Where was your cancer located? My cancer is in the GE junction. Just got diagnosed a..." + (show)
@mason1616

Where was your cancer located? My cancer is in the GE junction. Just got diagnosed a couple days ago.

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Welcome, @mason1616. Getting a diagnosis of esophageal cancer is a shock. Fellow members @armylife @snickers124 @sunray also had esophageal cancer of the gastroesophageal junction and can share their experiences.

Mason, do you have a treatment plan yet? How are you doing?

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1 reply
snickers124 | @snickers124 | May 4, 2023
In reply to @mason1616 "Where was your cancer located? My cancer is in the GE junction. Just got diagnosed a..." + (show)
@mason1616

Where was your cancer located? My cancer is in the GE junction. Just got diagnosed a couple days ago.

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Welcome mason2616. My cancer os also at the GE junction. I have finished my chemo/ radiation and am now healing for Surgery on June 14. I’ll be happy to share my experiences with you. @snickers124

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