Looking for others' experiences with Esophageal Cancer treatments

tough for me to add anything positive as i am going through a very difficult time. my first surgery was on February 20. on March 1 i went home only to go back that night because of breathing issues. turns out my esophagus leaked into my lung. on March 4 i had another surgery when they detached my esophagus and stomach. i was in the hospital for 1 month , then rehab for 1 month. now home for the last 3 months with a j tube and a fistula drain, i am preparing for my 3rd surgery to put stomach and esophagus back together on August 25...acceptance, patience, and tolerance have been helpful for me

Hang in there - it will be your last surgery and then just recovery. Month after month you will get stronger and better !

Zzonner,
I am so very impressed with your uplifting attitude!!!! So important to keep positive.
I had esophagectomy surgery April, 2020 @ Mayo / Rochester. I was suppose to be in the hospital for 1 week but I contracted an infection in one of my drainage tubes and had to stay an additional week. My husband was so relieved. HaHa. Poor guy was worried about being an at home nurse.
I had the invasive surgery (don't remember now the technical term). They removed my esophagus and stretched my stomach up and attached to the remaining esophagus. Was a huge success!!! I had a J tube (feeding tube) in my intestine. No food or drink at all via mouth. Meds were crushed & dissolved in water then inserted into tube. Piece of cake really once you get the hang of it.
That really was the only hard thing about the whole experience was nothing in the mouth as my mouth and throat got so dry. You will be fine as it sounds like you are already the epitome of health & physical strength and have an excellent support system!!!! Just remember this is a big surgery and you NEED to give yourself time to heal and rest. Do not push it. Your body will tell you what you need to know if you pay attention. And don't be afraid to utilize them pain meds, they gave them to you for a reason. If your in pain, take them.
Good luck & prayers going out to you,
Lori

tough for me to add anything positive as i am going through a very difficult time. my first surgery was on February 20. on March 1 i went home only to go back that night because of breathing issues. turns out my esophagus leaked into my lung. on March 4 i had another surgery when they detached my esophagus and stomach. i was in the hospital for 1 month , then rehab for 1 month. now home for the last 3 months with a j tube and a fistula drain, i am preparing for my 3rd surgery to put stomach and esophagus back together on August 25...acceptance, patience, and tolerance have been helpful for me

Fistula are not good. I've talked to a few who have had them... not many surgeons even know how to repair properly, and of course they come in many shapes and sizes. How was it you were discharged from the initial esophagectomy? Everything looked perfect during your leak test? When did you first notice things weren't going down correctly... even water? How big is this perforation in your esophagus? And what technique are they using (sponges and stents?) to close this off? This could take months! Even in southern California there are not many who are experienced in fixing these. In currently talking to a gal who had her surgery in Dec... and is still getting this fixed. Had to travel up to USC's Keck hospital near downtown LA to find someone who could maybe fix her fistula. 6 months, on and off, with stents. So this has obviously set her back from being on with the normal post-op pathway towards digestion. And that really sucks!

I will pass on her contact info if you are interested... and she approves... which I'm sure is a slam dunk. But we must follow protocol.

All the best,

Gary, Southern California

Thanks for the honesty. Fortunately I am retired and we like 4 miles from the hospital so it won't be so hard on my wife. I am up for the challenge as this monster frankly has me pissed off.

Hey "zzonner".

Have not heard from you but I remember your surgery was scheduled for yesterday, Aug 1. Hope all went well and that you are not too uncomfortable. No heroics - say yes to the pain meds. Once you are up to it, let me know how you are doing. Sending positive thoughts and prayers your way.

Frank

Funny, I sent your you a message last week. Guess it got lost. Surgery was 9 hours yesterday. Little to no pain. Walked the halls a bit this morning. Chest tube maybe out tomorrow. Feeling really good. Starting feeding tube tomorrow. Leak test tomorrow. Mayo has it together. I’ll be in touch early next week.

Hi there, Lori,
I’m so glad your surgery went so well. I’ve noticed on this forum that people talked about eating so many foods, and being prepared for the surgery, but I’m struggling to see how they did it. My husband’s tumor is in his lower third of his esophagus, and after the 28 days of radiation it is pretty fried. He still cannot swallow without extreme pain. He barely can swallow saliva. He cannot even have a sip of water. He has had nothing by mouth for the past five weeks now. He is feeding himself and giving hydration purely by his PEG tube. He manages it all himself now, which is great. However, we have had a kink in our plans for surgery. The stress echocardiogram showed that he has many probable blockages in his heart. If we do an angiogram and proceed with stents, he will have to go on blood thinners, which would be detrimental to stop if you were to stop in for a surgery like the esophagectomy. Extremely high risk either way. The cardiologist wants to wait until the surgeon is aware of his report. We will speak to the UCLA surgeon on Thursday. We could proceed to fix his heart, whether it needs stents or bypass surgery. But this may eliminate the esophagectomy. At least at this time. It would be one thing, if my husband could swallow and eat food and continuous somewhat normal life. But this year threw a kink in it.
As far as gaining his strength back for surgery, he has no stamina, but he’s trying to gain it a little bit. We are not sure if it’s his normal weakness after chemo and radiation or is his heart unable to stand any type of exercise. As far as we know, he did not have any heart issues prior to this. we are questioning whether it’s the chemo or radiation that may have damaged his heart. He is trying to use weight bands to gain some tone and his muscles of his arms and he can tolerate 15 minutes of that per day right now. He’s only 57 years old! We have some major choices to make I guess in the near future. We are praying for the Lord‘s healing and strength and wisdom at this time.

@pj03, I know you were writing to @lori57216, but I thought I'd jump in with my dad's experience. When he was diagnosed (colon cancer), they did some preliminary testing to check his heart before surgery. This is routine. Luckily they did because they found a problem, something genetic that he had had since birth and didn't know. It didn't prevent him from having surgery in his case, but they were equipped to monitor closely.

There is a special discipline called cardio-oncology. Mayo Clinic offers expertise in addressing heart problems (called cardio-oncology), potential or current issues. The Cardio-Oncology Clinic (https://www.mayoclinic.org/departments-centers/cardio-oncology-clinic/overview/ovc-20442193) evaluates people prior to cancer treatment and patients who have experienced side effects due their treatment.

It sounds like you are in good hands with a cardiologist as part of your team coordinating with the surgeon.

I'll also add that not everyone with esophageal cancer has surgery as part of their treatment plan. @dsh33782, for example didn't have surgery, just radiation and chemotherapy (I think).

Is your husband working with a rehab specialist or PT to help him regain strength?