Esophageal cancer....transitioning to food
Hi everyone. My husband recently had surgery and while he still has the feeding tube, he is transitioning to foods. Just looking for any tips. We know to start with soft foods, small amounts, and no fluids during, but just thought I’d see if anyone has any other info…. thanks!
@trudivo, Hello and welcome to Mayo Clinic Connect. This is a great topic for the community. Thank you for posting it. All future readers will benefit from this post as well.
Please meet members @lzzie @mrsjhagen18, @geezer, @patricia1215, @hemicars and @lisa_sj99– all members who have mentioned trouble swallowing or caring for a loved one with throat cancer.
I would also like to share the link to our caregivers group with you. Please feel free to post and connect with those in the group that also are caring for a loved one. https://connect.mayoclinic.org/group/caregivers/
Did you and your husband meet with a dietician post operatively? If so, did they give you ideas for extra calories? Would smoothies be an option for him? There are all kinds of recipes on the web. (if you find a favorite make sure to share it with your friends on connect! 🙂 )
Liked by Colleen Young, Connect Director
Thank you, Colleen. We did visit preoperatively, and she did give us an overview then, but as Brad had a few complications we have not been for his post-op follow up with the Nutrition department.
Liked by Colleen Young, Connect Director
Colleen, we have an esophageal cancer support group that meets, but we also meet patients when they are here for appointments, when they are in the hospital, etc. I try to connect those with like protocols. We all have eating problems after procedures. Our group just talks about what works & what doesn’t work with each of us. I live in JAX. Private message me if you want more info.
Liked by Jamie Olson, Connect Moderator, trudivo
Welcome to Connect, Mary Helen.
Sounds like Connect is an online version of your in-person support group and the mentoring you do when patients are in Jacksonville for appointments. Meeting someone who has been there is so important. Being able to do that in person is extra special. I’d love for Connect to be an extension of your support group, to help people stay connected when they leave the clinic and return home perhaps further afield and even other states or countries. We have many head and neck cancer patients and family members from all over the country and from other countries participating in the discussions here.
Mary Helen, you’ll notice that I removed your personal email and phone number from your message above. We recommend not sharing personal contact information to keep you safe and from getting unwanted spam. You can read more about the Community Guidelines and how we keep the community safe, respectful and inclusive here: https://connect.mayoclinic.org/community-guidelines/
Can you please post more information about your support group in Jacksonville, Florida? When and where do you meet?
Definitely would like to know when you meet 🙂
We meet quarterly, the third Friday of January, April, July & October at 12:30 in the Vincent Stabile Building, Room 150 or 153. It is right behind Mayo’s parking garrage. Dr. Michael Wallace & Dr. Herb Wolfsen are doing the progrsm in July & in October another gastroenterologist there is presenting a program on the bacteria in our guts! We hear so much about that now – which is the good bactetia – which is bad – are we taking the wrong probiotics, etc. I am anxious to hear her. Dr. Wallace just spent a month working at the largest esophageal cancer center (hospital) in the world in Kenya!
Everyone is welcome – we talk about what works & what doesn’t work for us. We all have eating problems after procedures as well as dumping, etc. The bacteria in our guts have an effect on this, for sure…Newspapers, our cards & brochures all have my phone & email to contact me – I met new patient at Mayo this Monday & have an appointment to meet another next week. Let me know if we can help!
Liked by Colleen Young, Connect Director
I started this support group ten years ago by listing my name, email & telephone number in newspapers for esophageal cancer support. I have worked with over 400 patients. They contact me from California to Maine, etc. I reposted on my Face Book page yesterday new research that lists the ten most dangerous operations & esophageal was #1 for difficulty.
How would I be able to read all your information you have collected regarding esophageal cancer? My husband had the surgery, now we are wishing he never did. It has been down hill ever since! Now he has the cancer recurring and it hasn’t been that long plus it is in his lymphs now and surgical area.
This site has removed my contact email and telephone number for esophageal cancer support. We will meet again at 12:30 October 20th on the Mayo campus in Jacksonville. You and your husband are most welcome to come. We share what works and doesn’t work to help each other. I also did a survey of members asking what they wish they had known prior to a procedure, when they were in the hospital as well as post procedure. It helps just to talk with someone who has been through the same protocol. I do hope your husband feels better.
We don’t meet in November – we meet in OCTOBER! Coleen, if you can edit that for me, I would appreciate it. Thank you.
Your post has been corrected to October as per your request, @maryhelen.
Anyone wishing to contact Mary Helen about the in person support group at Mayo Clinic Jacksonville, FL, please feel free to write to her here or send a private message.
Of course, not everyone can attend a support group in Florida in person. Luckily we can offer virtual connection too here on Connect.
My husband was stage 4 with a 12cm tumor in his esophagus and signs of malignancy in 4 surrounding lyph nodes. He didn’t have surgery only chemo — the tumor is now gone and he was declared in complete remission. He is eating almost everything in sight and gaining weight but it took approx. 9 months after diagnosis to get to this point. Everyone is different. It’s a struggle in the beginning but in the end my husband said it was worth it. Soft foods, protein, many small meals over the course of the day — ice cream?? (my husband’s favorite). I send best wishes for a speedy recovery.
Liked by Jamie Olson, Connect Moderator
Where did he go for treatment?
His oncologist is at Greenwich Hospital and is affiliated with Smilow cancer center at Yale and Weill Cornell and Columbia Presbyterian in NYC.
@nanny23
Posts: 23
Joined: May 23, 2017
Hope he feels better soon. Just found out I have Barrett’s esophagus. I have trouble with eating too.