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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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Glad to join this group. My tumor on the outside of the small intestine was found in October2019. It has metastasized in my liver. I have had the tumor removed and have had a TAE procedure on both lobes of the liver. I live in Canton Ohio and go to The James Cancer Hospital at Ohio State University. We winter in Jacksonville Florida so see Dr Starr and have my monthly injection at the Mayo Clinic. The clinic is only a 5 minute drive from our Condo. My two doctors work so well together. Dr Starr is always up to date on my records. I'm doing really well, only issue is diarrhea most mornings.
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2 ReactionsHello @lindack and welcome to the NETs support group on Mayo Connect, I am glad that you found this group. It sounds like you are getting good care both in Ohio as well as the Jacksonville Mayo Clinic.
Many of us who have been diagnosed with NETs did not have symptoms prior to the diagnosis. Were you having symptoms that led to the discover of the NETs?
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1 ReactionNo. I had a Gastritis attack and did a CAT scan and found the tumor. Doctor thinks the tumor had been there for years and had nothing to do with the gastritis attack
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4 ReactionsHello Linda,
I would like to introduce you to another new member of the NETs support group here on Connect, @mikecincy. Mike is also a resident of Ohio. He is just starting his journey with NETs and will be visiting Ohio State University for treatment as well.
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1 ReactionExact same diagnosis here. PET scan today.
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1 ReactionPrayers sent!
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1 Reaction@rocket102
I hope you can post an update when you get your PET scan results. Wishing you all the best!
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1 ReactionHi Linda,
Mike here from Cincinnati OH, a new patient with Colon NET.
I have my first appointment scheduled with Dr. Vineeth Sukrithan at James Cancer Center next Wednesday morning, and please share any insights or reminder you may have for me per your experience with James Center. Not sure if we can directly message each other for information we don't want to share on this public site.
Thank you Teresa for making the connection!
Best, Mike
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2 ReactionsThank you, that means a lot!
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1 ReactionI would be glad to answer any questions that Mike has. He will get great treatment at The James
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