← Return to Neuroendocrine Tumor - no treatment plan method

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@fraaseo

Definitely get a 2nd opinion & see a NETS surgical oncologist. Your symptoms are exactly like I had; vomiting, horrible diarrhea & abdominal pain that would double me over. I had a small bowel obstruction, mine was also in the mucosa/submucosal, 4 of 24 lymph nodes were removed. I had no further treatment (except for CT scans/bloodwork/PET scan) every 6 months until 2 years later & cancer had metastasized to liver, abdomen, peritoneal lining, gallbladder, diaphragm, appendix, that led to another painful surgery. Started Octreotide injections 3 wks after surgery. You have to be your own advocate based on how you feel & symptoms! I think Drs sometimes tend to lump patients together based on their experiences with other patients. Get a 2nd opinion & share what you find out. I wish you the best!

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Replies to "Definitely get a 2nd opinion & see a NETS surgical oncologist. Your symptoms are exactly like..."

I 100% agree with others, 2nd opinion with a NET specialist, and even better would be a NET Specialist that is part of a multi-discipline team. Our initial Oncologist just retired, and in his 40 years of service in our area, my wife was his 2nd case! So he referred her to a team which more than likely gave her great chance to live a full life after a stage 4 initial diagnosis. You got this and we all are here to tell our stories in the hope that you make the best decisions for your long term health!🙏🏻