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.

lionsfan | @lionsfan | Feb 27 2:30pm

The beginning of your journey sounds a lot like mine. I have been blessed with my wife's support and excellent care from Mayo and SSM Health. My 3 month scan showed no cancer and I'm currently doing immunotherapy for additional protection. Hopefully, I'm cancer free at two years also. Best to you!

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lionsfan | @lionsfan | Feb 27 3:17pm
In reply to @zzonner "It's been a while since I have posted, probably out of sight, out of mind. I..." + (show)
@zzonner

It's been a while since I have posted, probably out of sight, out of mind. I had successful surgery at Mayo Phoenix August 2023, did a year of immunotherapy and am cancer free. Doing scans every 4 months as a follow up. I am truly bless in that I have had few side effects, lost about 10 pounds since diagnosis, never experienced dumping syndrome, a few bouts of acid reflux, sleep fairly well and can eat pretty much anything, in moderation. No matter how you slice it, cancer treatment does result in muscle loss. One of my questions to the group deals with eating. I try and eat 3-4 times a day, and try to limit the quantities. Lately, almost every time after I eat I feel like I have an elephant sitting on my chest. It usually takes about an hour for things to settle down. Am I eating too much? I try and limit it to about a cup, but maybe because most everything is back to normal, whatever that is, I just forget I had this disease. Does this feeling ever go away? What can I do to minimize it? Does the new stomach stretch out over time?
The second question deals with immunotherapy. I am, or was, built like a linebacker, lifted weights and played a lot of tennis. The Optivo has made my joints ache. Physical Therapists have told me Optivo can cause or exacerbate arthritis. I am looking at a hip replacement now, not from Optivo I am sure, but it sure didn't help. Has anyone else experienced joint pain from immunotherapy? I am not complaining, I am so grateful for all the support I've received, but I liked the old me better. Maybe it's because I am 71. Thanks to all and good luck in you journey.

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My situation isn't very similar but maybe a couple ideas to ask your doctors. I was eating full meals (smaller and more frequently) after 60 days from my esophogectomy until I ran into a similar problem as yours. I had significant pressure and pain in the upper third of my pathway. It continued to get so bad that I couldn't eat or drink even small amounts without forcing myself to vomit. That only provided temporary relief. After 12 days of this, I became so malnourished and dehydrated, I checked myself in to my local hospital. Since I was on immunotherapy, I thought it might be a side effect. I ended up up having two endoscopies, a esophogram, two CT scans and an X-ray. My thoracic surgery team at Mayo didn't see a problem in the scans and felt the situation would pass (over two weeks now). My GI team found a sizable amount of food blockage between my diaphragm and intestines. The first doctor tried to pull foo up to clear it, while the second one tried to push it down through to the intestines. Additionally, my doctor prescribed a number of medications designed to activate my pathway and also relax my diaphragm. After a week of observation and treatment, I'm now back to a normal diet again. So far, so good. I really haven't had the joint pain you describe,but it sounds like you need a new hip anyway. My wife has two hip replacements and she's doing great. Ask the surgeon if he uses an anterior procedure. It's an easier and faster recovery but some surgeons aren't trained on it. Since the hip would then be titanium, I wonder if there would be any Optdivo related pain? Best to you.

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lionsfan | @lionsfan | Feb 27 3:34pm
In reply to @doglover888 "I had surgery two years ago. I lost all my muscle and lost about 65 lbs...." + (show)
@doglover888

I had surgery two years ago. I lost all my muscle and lost about 65 lbs. I weighed 85 lbs. yesterday. I eat fattening foods but to no avail. It's impossible to gain any weight. Hopefully things will change.

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It's normal to lose weight, 10 -20% of your previous weight. You're well over the expected amount. I assume you've consulted your doctor and nutritionist. What are they doing for you? You need a major portion of your diet to consist of high density nutrients and protein. Protein is critical. As you get stronger, start incorporating fitness in to your lifestyle again. You need to build muscle and strength for a multitude of reasons. Best to you.

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gburdette | @gburdette | Feb 28 8:13pm

As long as you are breathing you have purpose! You can be an encourager to others! I pray your family comes around even if you call first! Never give up, you are loved 🩷

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