Neuroendocrine Tumors (NETs) Support Group

Hi. I am diagnosed with NET Ki 80% potentially pancreas head and metastas liver. Looking for similar patients and willing to pay specialized doctors in...

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...

My partner has pancreatic NET, grade 2 stage 4 w metastases in liver - she is having first post diagnosis scan after 3 months lanreotide....

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...

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...

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...

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...

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...

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...

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...

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...

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...

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...

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...

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...

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...

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...

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...

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...

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...