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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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Besides this helpful group, there is another private Facebook group “Ronny Allan’s Neuroendocrine Cancer Group”. 8500 members. Vast amount of information there.
On the water issue I have especially in the summer chewed on ice chips. I had an ice machine for awhile but it broke down after a few years. What I do now is go to Sonic drive in and order a large cup of ice chips as well as having purchased ice trays that produce very small ice cubes and storing hundreds of them in my freezer .
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1 ReactionThose are some really good ideas, @patrick031621. Ice chips are a good way to hydrate without that full, bloated sensation that comes with drinking water.
My DIL received a biopsy report of “carcinoid NET in small intestine, stage 1”…
What is ahead?
Have they checked ur pancreas yet? Mine were found fem my biopsy on March 3rd. Next is a NET Scan and to make sure ur pancreas is ok as well. Have ur Dr. Not discussed any treatment plans just yet?
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1 Reaction@bubbles2023 Hello. Have they discussed a NET Scan with u yet? This will determine the depth and location of the Neuroendocrine tumor. This group is very helpful with answers and information. My biopsy on March 3rd discovered a Neuroendocrine and Carcinoid tumor. My next step is the NET Scan scheduled for July 6th and then an EUS to look at my pancreas and make sure its not stemming frm there. I'm Praying healing over us ALL!
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5 ReactionsMD has referred her to oncologist and have not had that appt yet.
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2 ReactionsThank you for responding! Please keep the suggestions coming!
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1 ReactionHi @bubbles2023
As you share your concerns and questions we will share from our own experiences. Looking forward to hearing from you again.
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2 ReactionsMay I ask how they found the carcinoid NET in your small intestines?
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