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Public Support Group 218 total results
Discussions (36)
Life expectancy with NETs and lifetyle as it progresses
What is my life expectancy as a result of my NET? Diagnosed 3 years ago with Grade 1, Stage 4 NETs. Primary tumor is probably...
NED GI NETS since 2012. New finding on annual chest CT, Tubular Mucoid
Original dx 2012 NET in terminal ileum. Right hemicolectomy, small bowel resection with 22 mesentary nodes removed, 2 positive. Had my annual imaging 10/19/22 MRI...
Carcinoid syndrome; NET not found
I have been receiving treatment for carcinoid syndrome for 3 years. It is believed tumor is in small intestine. Doctors waffle back and forth about...
Cu-64 Dotatate PET results show no malignancy. What’s next?
Hi all,I was diagnosed six weeks ago with NET after a small bowel blockage. NG tube and a ton of pain meds relieved my symptoms...
Has anyone had the peritoneal stripping surgery?
I was diagnosed with a small bowel obstruction (SBO) in 2022 that turned out to be Stage 2 NETS. Had surgery & did fine until...
A report from a follow up appointment
Hello ! Here is an update about what we discussed last week. I had an appointment ( second opinion) yesterday at Dana Faber. At least...
New To NETS - Stage 4 / Grade 1
Hello, my fellow NETS friends, My name is Eileen. I am 42 years old and incidentally discovered I have Stage 4/Grade 1 NETS when I...
Any tips about Cytoreductive, debulking Surgery?
I have been referred for cytoreductive/debulking surgery (at Mayo Jacksonville) because my scans show unexpected, fairly significant progression of the disease. I meet with the...
Stage 4 Carcinoid tumor: What treatments have you had?
To make a very long story short. Hubby was diagnosed in Oct 2022 with a carcinoid tumor. Dr removed a mass from the small intestine....
24-hour 5-HIAA reliability for diagnosing NETs
I've had over a year of carcinoid syndrome symptoms, like flushing, weight loss and bowel issues. If you've been diagnosed with NETs, did the 5-HIAA...
Stable metastatic NET – should I be pushing harder for PRRT?
https://connect.mayoclinic.org/discussion/stable-metastatic-net-should-i-be-pushing-harder-for-prrt/
Hi everyone, I’m hoping to get some perspectives from others who have faced similar decisions around PRRT. I’m a 40-year-old male with a well-differentiated Grade...
Neuroendocrine Tumor
I have been diagnosed with a neuroendocrine tumor 6 months ago. It started in my upper small bowl and had spread into lymph nodes. The...
Does sandostatin work?
First diagnosed in 2015 and had stomach pain, vomiting ,and two weeks of diarrhea.After catscan,a blockage wasfound at the junction of large and small intestine....
Lanreotide side effects: Anyone having GI issues?
4 yrs ago routine prostate MRI showed nets in my Ilium of small intestine, surgery 2022 to remove 2 feet of small intestine and about...
GI NET attached to pancreas supposedly non-producing
I had surgery to remove 3 nets from my bowel in September 2023One was attached to my pancreasThe primary was in my illeum and the...
Carcinoid Cancer and working
Hi my name is Audra and I was diagnosed with Carcinoid Cancer in 2016. I drove myself to the ER with severe pain and had...
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