Support Groups

Neuroendocrine Tumors (NETs) Support Group

Public Support Group
1,919 total results
Discussions (158)
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...
Last active: 4 days ago
Adenocarcinoma with Neuroendocrine
I have recently been diagnosed with the Differentiated Adenocarcinoma with Neuroendocrine Differentiations in the Gallbladder, Liver, and parts of right and left Abdomen. I have...
Last active: Nov 28, 2023
Anyone else get bloating and abdominal pain from NETS or Lanreotide?
I have primary NET in the small intestine, spread to stomach wall and liver. I just got my 3rd monthly Somatuline (Lanreotide) injection 4/12. About...
Last active: Feb 26, 2024
Updating about My Lanreotide Injections & CT Scan
As I promised I would after 3 months of lanreotide injections I’m reporting the results of my oncologist’s CT scan with contrast to determine whether...
Last active: Jun 15, 2024
My Chromogranin numbers are high. What is a more accurate test?
I had stage 4 neuroendocrine cancer 3 years ago. They removed 55 % of my liver to remove 3 tumors and 17 inches of my...
Last active: Sep 14, 2024
Anyone had plexus nerve block for cancer pain?
My mom is 81 and she was just diagnosed with pancreatic cancer stage IV that has metastasized to her liver. Her oncologist has suggested that...
Support Group: Pancreatic Cancer
Last active: Dec 29, 2024
Rectal cancer and tenesmus (urge despite empty bowel) - any relief?
Hello. My wife (53) was diagnosed with stage IV neuroendocrine rectal cancer last November. It had spread to her liver. She did 6 treatments with...
Last active: May 22, 2024
My doctors know nothing
There seems to be a general distrust of all doctors. That is sad. No matter how much homework I do, no matter how much I...
Last active: 15 hours ago
1.7 cm Pnet recently found. Is a biopsy pretty standard protocol?
A 1.7 cm Pnet was found on tail of pancreas about 4 months ago as an incidental finding. Lots of scans and a Dototate 68...
Last active: Aug 3, 2023
NET Stomach Discomfort
I was recently diagnosed with NET that has traveled to my liver. I can't get in for a petscan until mid February. I am in...
Last active: Jan 19, 2021
First Lanreotide Injection: Any tips about diet and side effects?
Good morning, I am an 81 yr old female & was diagnosed with stage 4 NETS in my liver metastasized from my lung in Dec...
Last active: Mar 15 10:34am
Has anyone had NETs metastasized to heart?
I was diagnosed with NETs in cecum, right mesentery, lymph nodes and liver in April, 2023. Today I found out that it has metastasized to...
Last active: Jan 30 4:12pm
Bland embolization or transarterial chemoembolization (TACE)
In Dec of 2019 I had grade 2 NET with Ki-67 of 7% tumors removed from my liverAccording to my surgeon they are behaving like...
Last active: Feb 7, 2023
Coninually low potassium
Have 5 nets in liver, lymph node, and kidney. Diagnosed almost 2 years ago. From at least then--and maybe before--potassium has been either too low...
Last active: May 30, 2024
Prognosis for Metastasized NET
My husband was dx with metastasized NETs originating in the small intestine 3 years ago. He's been on Sandostatin shot monthly since dx. Up until...
Last active: Mar 20, 2024
Just got the news… stage 2 Carcinoid tumors
Nothing like going to the Mayo for a routine prostate MRI only to be told you have 2 carcinoid multi focal tumors each plus about...
Last active: Oct 23, 2022
My Sister and Best Friend
Hello. My sister was recently diagnosed with a pancreatic neuroendocrine tumor that has metastasized to her liver. She went into the ER presenting with signs...
Last active: Jun 23, 2023
Anyone with NET stage 4 experience heavy sweating and high gastrin?
Hello everyone, My name is larry from Dallas, Texas. 09/2020 I found a mass in my left neck and Biopsy showed NET stage 4. My...
Last active: Nov 21, 2022
Anyone have bouts of severe sweats accompanied by muscle weakness
Diagnosed with NETs in liver end of 2022. Had TACE procedure to largest tumor last May. MRIs every three months. Primary cancer site undiscovered. Have...
Last active: Apr 12, 2024
NET in body of pancreas: What are my treatment options?
I have two tumors in body of pancreas 1.4 cm and a 6 mm. One was biopsies and apparently it’s a NET. Was told to...
Last active: Jun 16, 2024