NETs: Scheduled for small intestine resection: What to expect?

Sorry diagnosed April 2022.

I had a small bowel resection in 2007 because my carcinoid tumor had grown around several loops, causing blockage. I did well with the surgery. My advice is get back on a solid food diet as soon as you can, and walk, walk, walk!

I did not have the liver ablation because the cancer had not spread there at that time.

Best wishes on your journey!

Following a very uncomfortable blockage (I had had no carcinoid syndrome), on July 1, 2022 I had the surgical removal of a neuroendocrine tumor in the small bowel. I’m a relatively healthy 81 year old man.
It was “laparotomy general surgery” (large incision). The surgeon removed a well-differentiated neuroendocrine tumor with a 1.2 cm greatest dimension. Tumor was also present in 1 of 6 lymph nodes. He removed 19 cm & 5 cm segments of bowel in a resection of distal jejunum. Staging: pT2, pN1, pMx. For a week after I was home from the surgery I had significant night sweats but none since that.

I had a PET scan with dotatate (Cu-64) on August 23, 2022. The radiologist noted that it showed “multiple small to borderline Cu-64 Dotatate-avid mediastinal and hilar lymph nodes, suspicious for metastatic disease.”
An Aug. 25th Chromogranin A blood test was 81 ng/mL within the standard range of less than 93 ng/mL. My oncologist offered to begin Octreotide injections. I decided to wait and to get a second opinion. I chose to go to Dana-Farber Cancer Institute in Boston and a team there examined the original biopsy, all tests including the PET and thankfully reached a different conclusion. They saw only slight “uptake” of the radioactive marker in those lymph nodes, not the significant uptake that is usually indicative of metastatic NET cancer. Combined with my lack of symptoms they noted that if a repeat PET scan in three months showed a similar result, I should be fine.
A November 22, 2022 repeat PET scan was “similar to the prior exam, stable.” Both Drs. were very optimistic and I have subsequently had several follow up CT scans, several Chromogranin A blood tests within standard range and no symptoms. I feel so very fortunate and strongly recommend second opinions. Good luck to you, PJ. Bob.

Appreciate your information.
Best of luck going forward

@pjsheridan2022, I moved your question about small bowel obstruction and surgery to this related discussion. Click the link to read all helpful comments.
- NETs: Scheduled for small intestine resection: What to expect? https://connect.mayoclinic.org/discussion/newly-diagnosed-and-scheduled-for-small-intestine-resection-what-to/

My brother had this as well as liver tumor removal (had metastasis to liver). He was in the hospital for a week. Then he was off work for some time (forget exactly how long but probably at least six weeks or more). He seemed to have a good recovery. Scar is minimal.

Digestion issues are different for everyone. I had about a yard of small intestine removed and NETs in other places two years ago. There are about a dozen small NETS in my liver. I take lanreotide. I have worked with several nutritionists over the course of my illness and learned important info. Only rarely do I go a day without diarrhea, which is especially bad after the shots. I find it important to stay hydrated and now drink electrolytes. The foods that I tolerate well are meat, fish and eggs, peeled potatoes, white rice and bread, apple sauce, strawberries, melon, brie, and well cooked oatmeal. As a former vegetarian it has been a difficult transition. Also no alcohol, caffeine, beans, garlic or most raw fruits and vegetables, and no soy. Every few months or so I try to eat a salad or something with no-no foods. It doesn't often go well.
FODMAP food maps are an excellent resource. I've provided useful info below, but this platform doesn't allow links.

This one is from another medication for NET but it has a lot recipes on there that are low amine foods that you can take a look at:
Managing the Symptoms of Carcinoid Syndrome (sandostatin.com)
For a comprehensive list of foods to eat and those to avoid:
Eating Right with a Neuroendocrine Tumor (NET) (netrf.org)

Had surgery to remove appendix and had two feet of intestine removed and resectioned. In hospital 11 days and ended up with a scar from pubic bone to two inches above navel. That was ten years ago and for the first year was on Lomotil for diarrhea. Started with low acid foods but after six months was eating all. Am on Sandostatin shots every 28 days . Two years ago, had baseball size tumor removed from neck, so have my doubts about the injections.

You are right about us all having different digestive systems in handling foods after a resection. I think it depends up what section of your intestine is removed as well as how much. Supposedly we all have different lengths of our intestines much. I had a resection a number of years ago but I can tolerate quite well raw vegetables. What I can't handle at all is anything sugary and can't drink at one time an entire glass of fluid, even water. I think most of my hydration comes from my raw vegetable intake like cucumbers. Diet for each of us is trial and error but most of what you list is good especially the protein part. I avoid beef quite a bit but find fish and especially sardines to work very well for me. I am not a big fan of sardines but you have to eat what works for you regardless. Sorry for you that you can't do salad. Maybe it is the dressing. I just do vinegar instead of any commercial salad dressing. Sometimes it is hard to know what is the culprit when you have problems especially with all the additives in processed foods. I can't do soy either and it gives me a headache besides. I think it has a chemical in it similar to MSG which for me gives me migraines.

@patrick031621

I appreciate your thoughts. Yes, the type of surgery, the location of lesions/tumors and the amounts of the intestine that were resected have a big effect on how we handle meals. I have the same problem with drinking a full glass of water. It just doesn't work well for me.