Total Gastrectomy for stomach cancer: What can I expect?

@twocents, I'm glad that you and your husband have received good care at Mayo Clinic and that you have confidence in the team. That said, it can be so helpful to hear from others who have first-hand experience with a procedure like a total gastrectomy to help prepare for what you can expect.

I'm tagging @freeflow @azcyclist2018 and @rred who can share some of their experiences and hopefully answer your questions.

In the meantime, you can read some of their experiences in this discussion:
- Gastrectomy and bile reflux https://connect.mayoclinic.org/discussion/gastrectomie-and-bile-reflux/

The biggest adjustment will be eating. He'll have to eat smaller meals more often. Do you have an appointment with an oncology dietitian to help you prepare and give guidance?

Thankyou for the info Colleen. Mayo is taking good care of us. We have appointments with three different dietitians a few Days before the surgery. The days before the surgery are full of tests, consults with the oncologist, radiation oncologist, and the surgeon. I’m overwhelmed already! I’m sure it will be exhausting. Thankyou for your help.

@twocents I can only imagine how overwhelmed you must be. So many different people telling you so many different things and most of them “speaking a foreign language.” By that, I mean so many different words and procedures. My big suggestion to you (from my own experience), is to get a good size notebook and start religiously using it. When I got sick 3 years ago, my husband started a notebook and wrote Everything that anyone said or did. It was several months before I could really comprehend what was going on but he had carefully written it all down. I now keep my own notebook with sections for my PCP, the neurologist, the oncologist, physical therapy, etc. I hope this will help. As a former oncology nurse, we asked all of our patient’s caregivers to do this and it made such a difference to them.
Will you stay connected and let us know how everything goes?

Thankyou so much for the tips. I will try to keep a journal from here on out. I wish I would have thought of that from the beginning. I have recorded most of our appointments at Mayo. So that does help. That way I can send it to family members and they hear what we hear!

Hi everyone! My name is Kristen and unfortunately my dad is having a Total Gastrectomy on Monday May 16th. I'm super nervous and scared for him and just looking for any advice, words of wisdom, diet plans etc.
Thank you in advance!

Hi @kbcutiepie, I can imagine you're nervous and scared for your dad as the date approaches for his total gastrectomy. I moved your message asking for words of wisdom and support from others to this existing discussion:
- Total Gastrectomy: What can I expect? https://connect.mayoclinic.org/discussion/total-gastrectomy/

I did this so you can connect with @twocents @freeflow @azcyclist2018 @rred and others.

Cutiepie, can you share a bit more? Why is you dad having a gastrectomy? Will you be with him on the day and his main caregiver? Or are you supporting the main caregiver?

Hi Colleen! My dad is having the surgery because he has stomach cancer. He went through Chemo and as of right now he is cancer free 🙂 but the Doctor is concerned that it will come back and if it does, it could spread and we obviously dont want that! I'm hopeful the hospital will allow both me and my mother to be with him. My mother will be the main caregiver, but i'll be right there with her for anything that they need!

I would like to add to this, from things I have learned as a cancer caregiver. I have found it VERY helpful to take pictures of any important documents (doctor business cards, port identification cards, stent information, suggested diet, etc). I made a folder on my phone for medical information for my husband and I keep it all in there at the tip of my fingers). I have found a notebook, as mentioned, very helpful for recording symptoms and what my husband was eating while recovering from the surgery and during chemo and radiation. I also record any blood pressure, temperature or pulse oxygen I take in there. That way I don’t forget what has happened if I am asked.

I am very sorry your husband has that diagnosis, as does mine. My husband had the total gastrectomy last September. At first, he was having a lot of trouble eating right. I found it helpful to out his protein and calorie goals on a white board. A friend of mine that is a dietician even helped me make a schedule of things to eat that he was willing to eat.

After a couple of months, he could eat a wide variety of foods and was much more normal. He still had to eat often, but the quantities he could eat did gradually improve.

Right now he is having more trouble because of strictures forming at the junction between his stomach and esophagus. I am hopeful that this will eventually resolve.

He got very very skinny (he always was thin) but we found that he can put some of the weight back on when he is able to eat well.

He sleeps propped up. If your husband needs to sleep with his head elevated, I think it would be easier to prop up the head of your bed with blocks that stores sell.

If I can be of any help, feel free to write back.

@kbcutiepie, I was in the same role with my mom and dad when he had colorectal cancer surgery. I hope you saw the great caregiving suggestions that @nrocpop shared about taking notes and using your phone to take pictures of important information.

When will your dad have surgery? Are you able to be there with your mom?