Carcinoid cancer: Want to meet others

Did they give you pain meds? Did they give you a binder to wear? I hope each day gets a little better for you.

I believe the pain was mostly from the incisions made for the robotic instruments and an area like another C-section where I believed they removed the affected colon. The incision were made from the left side all the way to the right. Thats a lot of 'meat' to go thru. lol. But seriously from the left all the way to the right lots of area to cut thru and was much worst then the missing colon area. That part was sore but not as bad as I thought it would be. Didn't realize that would be done that way.

No not yet.. I do know that one part of it was grade 1.. which I understand is very slow growing.. YAY.. but no stage as I believe a lymph node was involved. And no knowledge is any further treatment is needed.. HOPING PRAYING .. we are DONE.. but who knows

I had surgery for carcinoid tumors in my small bowel and abdominal cavity 12 years ago, at Jacksonville Mayo. The report was that the tumors had metastacized, and they told me that I did not need further treatment, but to watch for the development of carcinoid syndrome. I had one small, fatty tumor on my liver, which has since disappeared. Although I have had no symptoms of the syndrome or regrowth of intestinal tumors (a possibility, they told me), I am wondering if I should have the HIAA and seratonin blood tests done just to see if anything is still active. I had my last check-up at Mayo two years after my surgery, and they told me I did not need to return until I had symptoms. My local doctors think if one is not actively ill, no need for tests. But I worry about what is there, and I should be more proactive about my health. Any advice, here, please?

Hello @dchance1

I'm so happy to hear your post-surgery report. Like @tomrennie, said it must feel good to have this part of your treatment behind you. As my surgeries for NETs was in the upper digestive tract, I'm wondering how the colon surgery has affected the way you eat. Were you given any dietary suggestions or restrictions?

A while back, I started a discussion, "How Do I Eat After Digestive Tract Surgery." Here is the link,
https://connect.mayoclinic.org/discussion/how-do-i-eat-after-digestive-tract-surgery/
I would encourage you to read some of the posts and to post about your own experiences. I hope you continue to get your strength back and have good pain control. Will you continue to post about your progress?

At a week out of surgery, I was not given any dietary restrictions, BUT I have placed myself on one for a little while. I eat more softer foods likes soups, peaches, rice and fresh fish when I can find it and the sort. Been wondering about other fruits and veggies. I will add mushrooms and items like that this week. To be honest, a lil scared about what the wrong foods for me will be like. I did learn that the bottom part of my colon, from my appendix area going up to about 12 inches or so was removed and parts of the area where the small intestine came into the larger was resected. So, I am still in the learning phase.