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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?
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HugInterested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.
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I would be glad to answer any questions. He will great great treatment at The James
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1 ReactionDon't know either. Dr S is my doctor too. Make a list of all your questions. He will answer all of them. You will be very happy with him
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1 ReactionThank you! that is assuring!
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2 ReactionsGlad to help, Mike. I really understand how important it is to have some background when you are going to a new specialist.
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1 ReactionHello @bubbles2023. You will notice I have moved your post, and the replies, into an existing discussion on NETs, which you can now find here:
- NETs: Scheduled for small intestine resection: What to expect?: https://connect.mayoclinic.org/discussion/newly-diagnosed-and-scheduled-for-small-intestine-resection-what-to/
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3 ReactionsHi mgb20, 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 tolerated the anesthesia and surgery well, in fact recovering quicker than from the anesthesia than in previous surgeries. Hospital recovery was from July 1 to home on July 10. It would have been a shorter stay but I had some problems with reestablishing normal bowel movements. I walked more than any patient my nurses had had recently, they all agreed and I think this helped with my bowel recovery. I have had surgeries to remove: prostate, thyroid, appendix, one kidney & gall bladder and this was “easy,” comparatively speaking. I’m fortunate that two subsequent PET scans with dotate (CU-64) and CTs have not showed any metastasis and I have no symptoms. A perusal of stories on this group will hopefully reassure you that NET is usually slow growing. Good luck, Bob.
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6 ReactionsI appreciate your encouraging story of your NET surgery and recovery, @beech18bob.
How often do you have follow up scans?
Hi @taneall
I am in the same boat as your husband...grade 1, stage 4. It is in my small intestine, lymph nodes, liver and possibly heart (still waiting on MRI to determine what it is in my heart.) I am scared to death of having the surgery, but your story has encouraged me to go ahead with the surgery, that it may not be that bad. How is your husband doing now? I'm hoping to hear some good news from you because this is a long, hard and scary road to travel. Sometimes I think it may be harder on the caregiver than the actual patient!
Anyway, I'm sending positive energy your way and hoping that you and your husband are both doing well!
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3 ReactionsHi Teresa, Volunteer Mentor, Initially at 3 month intervals (two times) and now at six months intervals. Probably go to one year between after the next. Thanks for your good work. Bob
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2 ReactionsHi helloitsme,
I'm glad you reached out. We were both very scared about the surgery. It was the best course of treatment for a slow growing cancer like NET. My husband has recovered very well, back to his normal energy and exercise regime. He had his first CT scan 3 months after surgery, no tumors found and will have another one 3 months later. He is on a surveillance plan right now. No treatment. It could be 3 years, 5 years 20 years or maybe never the cancer will return. Nobody knows. All his pathology came back with clean margins. They took out 15 nodes and only one had the cancer. There were an additional 5 small tumors found on the outside of his small intestine that prompted 2 feet to be removed. The surgeon felt the entire small intestine during the surgery. As a precaution the gallbladder and appendix were removed too. No cancer in those.
We had a specialist in NET cancer do the surgery. At the first appt he told us to read up as much as we could about the cancer, good advise. We found the NET research foundation that has online podcasts to listen to that explain the tumors. This helped us a lot. If you Google search use Google scholar to see research papers on the cancer. We were very fortunate the primary source was found in the small intestine. Makes a huge difference. His was found during an emergency hernia repair. We were lucky to have gone through that first to find it. We put our faith in God to navigate the process. We had to pray for patience as sometimes it seemed like forever to get referrals and tests done. Praise God my husband is doing well. I Pray that you get the answers you need and your surgery goes well. It will be hard at first. My husband spent a week in the hospital. Walking is the key to recovery, he walked from the first day after surgery in the hospital with his 2 poles of hook ups. He got an infection a month after surgery from a random internal stitch that popped out, antibiotics took care of that.
One day at a time! You can do this!!
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