Esophegectomy

Robert2020

I was diagnosed with advanced stage III esophagus  in June of 2020. Needless to say I was in shock.  It all started when I had extreme difficulty swallowing anything,  even water was painful.  The tumor was very aggressive and growing.  I was put on Chemo and Radiation for 5 week to shrink the tumor. After that surgery was scheduled to do an ESOPHEGECTOMY.  I spent 15 days in the hospital at MD ANDERSON CANCER CENTER in Gilbert, AZ.  My surgeon performed the removal of the Esophagus and a portion of the stomach by LAPERSCOPIC 15 hour procedure. They had to collapse my right lung to gain access to pull the stomach up. They were unable to get all the cancer so now im on a more aggressive chemo treatment for the next 6 months with 46 hour sessions.  Needless to say my life style has changed dramatically.  I can never eat a full meal again.  I have to snack all day. I still suffer from a very violent cough that they say can take months to go away.  I got Pneumonia and pleurisy from asperating after surgery.  I have to sleep at a 30 degree angle forever.  I ban never lay flat again.  I have lost 25 Lbs due to unable to eat. I an nauseous and have Diarrhea daily. 

I would love to speak to other people that are going through or about to go through this major surgery. It had been 9 weeks since surgery and im still trying to figure out eating habits.

Thanks for reading and MERRY CHRISTMAS

Robert

 

Deathorglory

Hello

Hello Robert,

My first time with EC mirrors your experience pretty well.  I was 40 years old in 2008 when I was diagnosed with stage III EC.  I did 5 weeks of chemo/radiation, recovered for a couple of months and then had my surgery.  They were able to get all of the cancer, but I still did a bonus course of chemo for six months.  The chemo was the same as with the radiation, but much stronger, and it included a pump full of 5-fu that I had totake with me and wear for two days at a time.  I also wound up with pneumonia from my hospital stay after surgery.  As a result, I had to sleep sitting up in a chair for a couple of months, but when the pneumonia went away, I was able to start sleeping laying down, although in an elevated position.  

As you mention, folks frequently wind up with a persistent cough for a little while.  And your eating will need to be rearranged some.  You'll eventually figure out what foods give you problems and which foods you can eat with impunity.  That's just a straight trial and error process that is different for each person.  And the weight loss is a fairly universal side effect.  It actually took me eight years to regain the weight I lost, but I'm now five pounds over my pre surgery weight.  My "stomach" also stretched back out to the point that I can now eat whatever I want in whatever quantities I want.  But everyone has to eat smaller, more frequent portions, that's just part of the price of staying alive.  And diarhea, oh, don't get me started.  Let's just say I went years and years of never, not once, going less than three times a day (and frequently more).  But that faded away, oddly after I stopped taking medicene and getting shots for it.  

It sounds like you are well within the normal range for things.  I hope you continue to heal up and reach whatever your new normal is.

Best Wishes,

Ed

6840 Cleveland

Esophegectomy

Robert,

My wife had and esophgectomy at Duke Medical Center on 10-26-20.  She has been nausiated and vomoting 24/7 ever since this surgery. Have you had simular issues?

HP

Mikesurvivor

Hello Robet, Ed, and HP,

Hello Robet, Ed, and HP,

 

I am new to CSN just found it today.

Like you I would throw up anything I ate. My throat didn't really hurt. It just felt like something was stuck there. Uncomfortable would be best to describe it. Being retired Army, my insurance (Tricare), required me to use military medical facilities. The gastroenteroligist at the facility had tests ran. The first diagnosis was a hiatel hernia. A simple procedure to pull my stomach back down. That didn't happen. When they went in to do the procedure they found the tumor.

Wednesday after Thanksgiving 2005 the Gastroenterologist called me and told me that I had cancer and hung up. No referals to a specialist. I went to the head of med center and they told me pretty much that I had 6 mos. and to find my own specialist.

Luckily one of the leading cancer specialists was heading up a new center in Savannah. Dr. Brower and his team developed a plan.

Late that December my first feeding tube was put in. Within days I had pulled it out. A second procedure and second feeding tube put in. This one started leaking, (I was still eating what I could), oatmeal came out along where the tube went in. I was in the hospital over the holidays. Along with fixing the leak my port was put in. I woke up New Years 2006, needing to pee but couldn't and my whole left side was swollen. I demanded the night nurse put in a catheter it hurt so bad. DR. Brower fired the inturn that morning and put me on antibiotics. I was going down hill fast.

What they had planned is what you have gone through. I was to have chemo and radiation, than surgery. But my failing condition caused them to do surgery first. I was in the hospital from December 28th til Feb 6th. I feel that the infection I got on is what saved me. Reversing the plan. Surgery, than chemo and radiation. Dr. Brower felt certain they got it all in surgery.

I lost a third of my stomach and 2/3rds of my esophogas. I had chemo twice a week and radiation once a week until mid June. I was on the feeding tube until July. The scar between my esophagus and stomach was stretched once a week from July thru October. Every three months I had a contrast full body catscan. The scans went down to every 6months and than yearly. The last 3 were with nuclear contrast.  In 2011 Dr. Brower declared me in remission.

I've taken salt completely out of my diet. Every label in the grocery store I check the sodium level.  We buy low sodium baking soda and powder. One bite and I can feel the salt if there is too much. When I order out I ask for unseasoned food. I'm suppose to eat 5 meals a day. I eat 2 good sized (for me) and forage the rest.

Some of the side effects of chemo/ratiation. I lost 3 teeth, just broke while eating. But my vision has been corrected. I no longer have bad stigmatism.

Do as much exercise as you can. Chemo and raditiion will wear you down. I would be up at 4am walking the floor with my pole and tubes every morning while in the hospital. I worked full time, outdoors, untill last summer. I turned 65.

I don't know how much longer I have. They say Esophageol cancer always returns.

I hope my experinces help you all.

Mike