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Neuroendocrine Tumors (NETs) Support Group

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Discussions (68)
PNETs: What comes first? Surgery or try to shrink tumor with chemo?
Pancreatic nets on the tail moved to liver. It might be nonfuntional as it was found by accident and was shocking is an understatement.Do the...
Last active: Jan 25, 2025
First scan after 3 months of lanreotidec
My partner has pancreatic NET, grade 2 stage 4 w metastases in liver - she is having first post diagnosis scan after 3 months lanreotide....
Last active: Jun 23, 2025
Help understand interval progression
First scan after 4 lanreotide monthly shots for pancreatic net grade 2 stage 4 w liver (both lobes) metastases. Advice on understanding interval progression and...
Last active: Jun 17, 2025
New PNET Question Re: Surgery (I'm in bit of a pickle)
Hello, I’m 90 days post-diagnosis with a G1 (non-functional) pancreatic malignant neuroendocrine tumor (PNET) on my pancreas, measuring 1.3 cm (CT scan on 4/23 showed...
Last active: Aug 7, 2025
Anyone have a small pancreatic IPMN cyst that turned out to be cancer?
Have CT scans every 6 months to monitor both recurrent breast cancer and neuroendocrine lung cancer. CT showed 7 mm cyst that looks like side...
Last active: Oct 5, 2025
Immunotherapy (Ipilimumab & Nivolumab) for NETs: Any experiences?
Diagnosed with high grade(3) neuroendocrine carcinoma. Irgun duodenum. Mets pancreas and many in liver. Did 4 cycles of carboplatin and etopiside chemo in hope to...
Last active: Jun 6, 2023
High risk surgery. Is it worth it?
I had my primary net removed, along with a right hemicolectomy, three other mets and 23 lymph nodes in Sept 2023.A follow up Petscan in...
Last active: Mar 29, 2024
Grade 1 Non-functioning (NF) NET
I have a well defined NF 1.7cm PNET in the body and a 6mm tumor (not biospied) in the tail of the pancreas. PET scan...
Last active: Jun 11, 2024
NET's and possible liver transplant discussion
Today, during our meeting with our NET cancer team, we were reviewing the results from CT, MRI, and PET scan, and in general we are...
Last active: Jul 18, 2023
What's the best way to detect liver metastases?
Hi, I was just diagnosed with pancreatic NET (17mm) and was told that I should get a surgery to cut it out asap. Did a...
Last active: Feb 5, 2023
Stage 4 grade2 Pancreatic Neuroendocrine ki67 20% Lanreotide
I was diagnosed late February 2025 by liver lesion biopsy with neuroendocrine grade 2, well differentiated. Ga68 Dotatate Pet scan end of March confirmed pancreas...
Last active: Sep 16, 2025
Metastasis to the Liver Caudate Region (Segment 1)
In reference to my wife: Recent C/T of abdomen and pelvis showed "increased hypervascularity in the haptic metastasis in the caudate". Initial discovery Background: NET...
Last active: Jul 16, 2025
Focal SUV levels ga68pet/ct… what does that mean?
Hi again amigos! I was just reviewing the results of my latest ga68 pet/ct scans and am finding conflicting information. I have stomach nets and...
Last active: May 20, 2025
Unsure , questions on what to do
I’m posting a little update we just got today after seeing a neuroendocrine oncologist . As mentioned before my husband had surgery to remove A...
Last active: Jul 28, 2025
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...
Last active: Apr 25, 2025
What am I missing? Possible NET?
What am I missing? I have been feeling sick for 7 months, basically life has stopped. They have done many many testings on me and...
Last active: Jul 12, 2024
Neuroendocrine cells in Breast and Lungs DIPNECH
I was diagnosed with DIPNECH at National Jewish Health 3/23. Two months later, I had a lumpectomy on my breast. The pathology came back with...
Last active: Sep 16, 2024
Keep Fighting
My wife and I visited with one of my doctors on my Mayo care team yesterday. We reviewed my recent tests. The CAPTEM chemo is...
Last active: Apr 17, 2023
Anyone had a significant difference between a CT and MRI reading?
My precious wife of 39 years has grade 3 NET in her liver and pancreas (also in the ileum that was removed). She is receiving...
Last active: Dec 26, 2025
More info on gastric NET w/liver mets and progression of symptoms
Hello I am new to the site. My 74 y/o husband is diagnosed with stage 4 gastric carcinoid tumor transverse colon which was partially resected...
Last active: Jul 15, 2023