Esophageal Cancer Caregiver

MCD2022

Hi. I’m a 47 yo woman who just married my long term fiancé in 6 days last May which was a week after he was diagnosed with esophageal cancer. We underwent chemo and radiation in June. Had some bowel issues that arose and had to have an emergency surgery which took a lot to recover from. In September he had an esophagealetomy which kept him in the hospital for 28 days. During that time he had a code blue in front of me which landed him in the ICU for a second time. We have been home for two months but he cannot swallow, is gagging and coughing constantly which makes him have to spit into a cup. He is withdrawn and has given up. He doesn’t get out of the chair we bought him prior to surgery. We have 5 kids between the two of us. The pressure of all of this is causing extreme emotional pain. Does anyone have advice on how to help him swallow? For a few weeks we was feeding through his port but now is using his j-tube. He has told me today that he thinks he’s never going to be able to eat or drink again. Any experience or advice you have would be welcomed. The doctors seem to think he should be recovering without this problem but it’s not getting better.

thank you very much

all of this has been so painful.

paul61

Hello MCD2022,

I am so sorry to hear of your husband's recovery issues. It does take a very long time to recover from an esophagectomy. I my case, it took almost a year before I felt somewhat normal again. It does sound like perhaps he might need to have his esophagus dilated in order to expand the opening a bit, sometimes a ridge of scar tissue forms at the anastomosis site and needs to be stretched. Of course your surgeon may be reluctant to do a dilation so soon after surgery because it takes time for the anastomosis site to completely heal.

I assume you have discussed his swallowing issues with his surgeon? Does his surgeon have any prognosis on how long he anticipates waiting to address your husband's swallowing issues? You mentioned the doctors suggest he should be recovering without this problem. I would think they should be giving you and your husband a timeframe that they are going to wait until they begin to investigate and address his swallowing issues specifically. It is typical to be on a j-tube feeding regimen for two or three months after surgery. Some patents for longer than that.

It is very typical to have some depression after a major surgery like an esophagectomy, particularly one with significant complications and an extended hospital stay. It sounds like he may needs the assistance of a phycologist and other specialists to address his recovery issues. Is your oncologist still managing his overall treatment plan and recovery?

This esophageal cancer forum does not get as much use and participation as some other esophageal cancer support sites. I would suggest you post your question on the Smart Patients website in the esophageal cancer section at https://www.smartpatients.com/. That site gets much more use and interactive participation.

Best Regards,

Paul

MCD2022

Thank you so much Paul. I have posted on Smart Patients as well. He has some appointments coming up this week that I will make sure to be at to get additional information. He has stopped advocating for himself and seems to get the same answer that he should be fine any day now and that gagging like this is not typical. When I google it, it seems to be pretty typical. I am going to ask about the stretching. Sometimes he can't even drink water without it pooling at the opening of his esophagus and slowly filtering down. I just want someone to help him and give him a reason to believe it will change and a reason to keep trying. I really appreciate your quick response.