Connect
NETs: Scheduled for small intestine resection: What to expect?
I was diagnosed with NET 2 weeks ago. I had symptoms of obstructed bowel which led to a CT scan showing a tumor in mesentery, followed by a PET/CT DOTATATE scan, then a CT with contrast. Also had a colonoscopy. The results showed a 3 cm mass in the small intestine and an adjacent 5 cm mass in mesentery, both withe DOTATATE uptake. Uptake in the retroperitoneal lymph nodes Oncologist says it’s Grade 4. No information on the Stage. Things are moving pretty fast bc of results showing obstruction in small intestine which could turn into a crisis. I am seeing doctors at Johns Hopkins. They started me on Lanreotide March 22 and I am scheduled for surgery next week on March 30 to remove the tumors and relieve the obstruction. This involves a small bowel resection.
I am quite worried about all this. Especially because it tuned out that this condition predates 2015 so although it is slow growing, it’s been growing for a long time and is now quite big. A CT scan in 2015 showed a 3 cm mesenteric tumor but no one noticed. Plus my brother died of NET in 1999.
I would appreciate some feedback on experiences with small bowel resection. The surgeon is telling me that there’s roughly a 10% chance I’ll have permanent diarrhea and also if he finds more extensive small bowel involvement that he may have to remove so much bowel that I might need to be feed via a port. Has anyone had experience with this?
Like
Helpful
HugInterested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.
Connect
@fergalicious my husband did not experience stomach spasms. Have you mentioned this to your surgeon?
-
Like -
Helpful -
Hug
1 ReactionYes-they are doing tests to see what’s going on.
-
Like -
Helpful -
Hug
1 Reaction@fergalicious no, he's not had any stomach spasms. If you are having issues please call your surgeon and ask if that's normal. They don't mind you calling. Take care
-
Like -
Helpful -
Hug
1 ReactionNannagross
I am so sorry, I am sitting here reading your post and it sounds something like what I have been through, in 2024, I started having another GI bleed, went to the emergency room, and was admitted, I am so thankful for the two physicians that were on duty that day. I have had several GI bleeds, all requiring hospitalizations. Becauseof my previous history, they decided to go the extra mile and ordered some extensive testing, I am so grateful for those two doctors.
What caught my attention with you was the fact that you were not informed about the findings before it got to this point.
With this last GI bleed and hospitalization, they sent a surgeon in to discuss the findings with me, she says, “oh! It's the same findings of a NET Tumor with metastasis, in your small intestine and mesentery that was seen back in 2019”, I look at her like she was from another planet, I told her, “no one informed me of any findings, rather I was told, “everything was fine.
I had to have massive surgery to remove quite a bit of my small intestine and mesentery, was in the ICU for two days short of a month due to complications from the surgery.
I am still besides myself because, the radiologist didn't point out the findings, (had he, I would have asked for further testing if. O one else would have, my doctor that has done numerous colonoscopies, endoscopies, biopsies, and surgeries on me over the years because of my GI history, told me everything was alright.
As a matter of fact, that doctor hasn't said anything to me since my diagnosis and subsequent surgery, and turned me over to another doctor in his practice.
Angry, disappointed, all of it!
I started Lanreotide injections every 28 days beginning April 3, 2026, with CT scans every six months.
I am dealing with upset stomach and diarrhea but over all I am in good health, with stage 3 NET Tumors.
I pray for health, and healing for you, and that the peace of God is your daily constant!
-
Like -
Helpful -
Hug
3 Reactions@nannahaseightneight Hi and welcome to Mayo Connect. Sorry to hear about your unfortunate NET journey so far. Hopefully, it is all behind you. Your first follow up scan after starting the lanreotide shot is in a few months correct?
-
Like -
Helpful -
Hug
1 Reaction@tomrennie as a matter of fact I am now over a year removed from my surgery 03/12/2025, and July 17, 2025 was my first injection of Lanreotide (every 28 days), overall, doing well (no complaints), all of my CT scans are negative for any new tumors. I must and will give all the Glory and Honor to my “great physician”, Jesus!
If it was not for His Grace and Mercy, where would I/any of us be!
Thankful for my awesome husband that has walked with me through this entire journey and nursed me back to health and wellbeing, for my earthly doctors who are constantly looking out for me, and for a community of people, I have been fortunate to get to know through this site having never physically met, yet I feel close to because we are all traveling together on this road we call life.
God bless you all!
-
Like -
Helpful -
Hug
7 Reactions@nannahaseightneight so sorry, I am new to this kind of thing, I responded in the wrong place 😊
-
Like -
Helpful -
Hug
1 ReactionPraise God!! @nannahaseightneight
-
Like -
Helpful -
Hug
1 Reaction