Seeking Long-term Survivors of Esophageal Cancer

annoulla

Hello everyone,

My name is Anna, and I am reaching out to this community for support and information. My husband has been diagnosed with stage 2 adenocarcinoma of the esophagus. After undergoing chemotherapy and radiation therapy, he is now scheduled to have an esophagectomy.

I am very anxious about the surgery and what comes after it. I am particularly worried about the potential for cancer recurrence and the challenges that might come with recovery from such a major operation.

Additionally, we have two young children, ages 7 and 6, and I am concerned about how they will cope with their father's illness and recovery.

Are there any long-term survivors here who have gone through a similar experience? I would love to hear about your journeys, how you managed post-surgery, and any advice or insights you could share, especially regarding family and children during this time.

Your stories would mean a lot to us as i am quit navigate this difficult time. May god bless you all, and give you the strength to keep going.

Anna

Srinipartha

Anna

Im very sorry to hear this - but dont panic. Trust in God - all will be well

I was diagnosed with stage 3 adrenicarcinoma in Oct last, had my chemo and radiation followed by esophagectamy in March. Im recovering well.

Please feel free to reach out if you want to talk

annoulla

https://csn.cancer.org/discussion/comment/1716025#Comment_1716025

Hi Srinipartha,

Thank you so much for your kind words and for sharing your experience. It’s very comforting to hear that you’re recovering well after your treatment.

I wanted to ask if you have any tips regarding diet for my husband during this time. Any advice on what foods were easier to swallow or more beneficial for you during recovery would be greatly appreciated.

I also want to say how much of a blessing this site is for people like us. The support and shared experiences are incredibly valuable and provide so much comfort during these challenging times.

Thank you again for your support. Stay strong, and I’m glad to hear you’re doing well.

paul61

Hi Anna,

I sent you a private message with contact information.

Paul

Sugeam7

My husband is a 14 year survivor of esophageal cancer that metastasized to his lung. He had an esophagectomy and partial lung removal. He is thriving -not just surviving. Surgeries were at OHSU in Portland Oregon. Please don’t forget to take care of yourself as a caregiver.

sherryduncan

https://csn.cancer.org/discussion/comment/1716054#Comment_1716054

Thriving not just surviving!! I love this. How old was your husband at diagnosis and what cell type. I am about to begin my journey of radiation/chemo/esophagectomy.

Sugeam7

hi He had Adenocarcinoma and was 55 when diagnosed. Where is he getting treated? His diet was restricted for awhile but now he stays away from sweet/dairy desserts but other than that can now eat almost anything. He uses a wedge to sleep (pillows when traveling) and doesn’t eat too close to bedtime. His regime includes regalin. During chemo/radiation he received acupuncture treatments to help his organs. He’s a research scientist.

sherryduncan

It is me who has cancer. I’m a 55 year old female with stage 2 squamous cell carcinoma. No lymph node involvement and no metastasis. am getting my treatment at the Univ. of Oklahoma Stephenson Cancer Center. I will be part of a randomized study where one arm of the study receives standard radiation and the other arm receives proton radiation. Chemo and esophagectomy will be the same in each of the divisions. How long was your husband’s recovery after his surgery? I’m a high school chemistry teacher so wondering how much work I will miss.

Sugeam7

His surgery was march 17. We went to Maui June 10th. He was not 100% and we were still learning how to manage food and sleeping but had a great relaxing time. He swam in the ocean and participated in most daily activities with our family.

sherryduncan

That is awesome!!

Sugeam7

Ohio state university has a paper published on the effects of strawberries on endenocarcinoma. He made shakes everyday with organic freeze dried strawberries and reishi.

Sugeam7

he also did some form of exercise (already was his daily routine but got difficult during treatment) daily - walking, treadmill, efx

chepito

Thank you for sharing and God bless all of you and relatives.

cat56

It is encouraging to hear about people who have had the esophagectomy and are doing well. I have been disgnosed with Stage III esophageal cancer and am beginning the chemo-radiation on Aug 21 and the plan is for my to have an esophagectomy. I have not completely decided yet whether to have it. I am not scared of the surgery itself, but am nervous about life after surgery, in particular "dumping syndrome." Any info and advice would be most appreciated.

Capergall

Hello. I'm new here and hate to be a wet blanket but I am 14 yrs from my Esophagectomy and have had nothing but chronic issues since. First was Delayed Gastric Emptying and lots of scopes and dilation. Then Redundant Gastric Conduit which called for a much larger surgery which was done in Toronto ( I'm from Nova Scotia Canada. Then a hernia developed in my chest next to my stomach with my small bowel , tail of my pancreas. Until that surgery I presented at the ED for Food Bolus quite often

cat56

https://csn.cancer.org/discussion/comment/1717673#Comment_1717673

Hello Capergall, I am sorry to hear you have had so much trouble. Thank you for posting this and please don't worry about being a wet blanket. I, for one, really want to hear from people like you for whom it has been really problematic.

Capergall

Thank you Cat56 , I'm sure you'll do fine . My case was an unusual one, I wasn't sent to the cancer centre nor did I see an oncologist. My surgery was done in a small local hospital with no thoracic unit. I didn't have any support and didn't know what questions to ask. When I found out three yrs later I didn't have cancer but high grade dysplasia I tried to report him to The Board Of Physicians and Surgeons and they said I did have cancer even though two thoracic surgeons said I did.. I wasn't allowed to appeal the decision.

hardtoswallow

Hi All,

I am new to this site but I just celebrated my 8th year post-esophagectomy and thought I'd add my insights about life after the big surgery. I had stage 1b squamous cell and most of my stomach had to be used for my stomaphagus so my pouch is really small. Very tiny meals 5 times a day, one of them is liquid because there's just no room for the food. Lots of post-surgery issues which are not deal breakers but make life challenging at times. And always, always, I'm 1-2 pounds away from going back on feeding tube. Weight gain is really tough.

Had 3 hole robotic surgery and never had any leaks but did have a bout of aspiration pneumonia this winter - from bile acid reflux which seems to be a late-night common occurrence for lots of people. It's nasty and I've discovered that most doctors don't have the patience to deal with it if you don't want to take drugs which usually cause other issues like constipation.

I'd say the biggest challenges are getting used to your new body, your relationship to food especially in social situations and finding supportive doctors, nutritionists and physical therapists who will help you move beyond patient and into as much of your old self as possible. This is a huge topic I believe and I'd love to discuss this aspect of post-surgery with anyone who's interested in building on this subject.

SpencerJohn

I am a 11 year survivor of stage 4 with 8 lymph nodes involved. 11 nodes removed but one at the base of my spine they couldn't get to. Fortunately the chemo and radiation killed the cancer in it. 57 year old male at the time of diagnoses. I had chemo and radiation first then esophagectomy. I'm not going lie, the first few days after surgery was brutal. I eat most everything except fried or spicy foods. You will have to sleep elevated for life. A wedge pillow works but getting an adjustable bed is a HUGE improvement. You can raise it higher on nights the acid reflux bothers you more than normal. Get an inflatable wedge pillow from Amazon for travel so it fits in the suitcase. I put it under the mattress on my side to make it much more comfortable. The dumping syndrome gets less frequent in the months after surgery and has completely stopped for me. I always keep candy or a candy bar with me in case of sudden sugar level drops. I take half a cap of MiraLAX with a full glass of water everyday for constipation. I don't eat anything after 7:00 at night to keep the bile and acid from choking me in the middle of the night. It will only take one night of that to train you. One thing my doctor told me has turned out to be true, you can eat the same thing 10 times with no trouble and then it will upset your stomach.
Daily walking or biking along with a positive attitude makes all the difference.

hardtoswallow

It's so great you have 11 years behind you.

Curious as to how much your doctors told you about the bile acid before and then after your surgery? I got no heads up on that, very little on the acid reflux as well. Do you still get the bile? I can't get a handle on it no matter what I do.

SpencerJohn

https://csn.cancer.org/discussion/comment/1724425#Comment_1724425

dfrt

The only thing I was told was to sleep elevated and don't eat past 8:00, no warning at all about what to expect. They didn't even warn me about dumping syndrome. I make sure to eat dinner no later than 6:00 and NOTHING past 7:00. The acid and bile is unbearable so I go out of my way to try and prevent it. I have an adjustable bed that I raise pretty high, this really makes a difference. The wedge pillow just wasn't enough for me. I take 2 Tums ultra 1000's at bedtime and when I get up during the night going to the bathroom. No fried or spicy food. The reflux always happens around 3:00 or 3:30. If I do get the reflux and bile I chew several Tums, brush my teeth after the coughing slows down and gargle with mouthwash. I keep a bag of Halls cough drops I use that soothes my throat and suppresses the cough.