Support Groups

Neuroendocrine Tumors (NETs) Support Group

Lock icon Public Support Group
Clear Search
2,562 total results
Discussions (214)
Straight to the liver: Anyone have NETs originating in strange areas?
I was diagnosed with NETs in 2021. My case was deemed unusual since it's only on the liver. According to my oncologist and from what...
Last active: Oct 4, 2024
Is MRI imaging on same machine for NETs + Liver metastases important?
I have been told by several drs and read that it is important to have your images taken on the same machine for the quarterly,...
Last active: May 20, 2025
Lymph nodes removed during surgery removing tumors in the liver
I have received different information about removing lymph nodes when a surgery is done to remove tumors in the liver. I have an unknow origin...
Last active: Aug 30, 2025
Pancreatic Cancer: Anyone have liver metastasis after Whipple?
Looking to speak with others who have had a successful Whipple procedure, but cancer metastasized to your liver
Last active: May 8, 2025
Grade 3, poorly differentiated duodenal NET metastasized to liver-
3 years ago, I had surgery to remove the duodenal NET diagnosed as grade 3 and poorly differentiated. After recovering from surgery, I had 6...
Last active: Jul 21, 2025
MRI or CatScan as follow up imaging for metastatic liver tumor?
I have read that MRI's provide better imaging for liver. Wondering what three month follow up imaging people are having for metastatic liver neuroendocrine tumors.
Last active: Jan 22, 2025
Experience w/ watch and wait approach for metastatic liver tumor
I have grade 2, stage IV neuroendocrine tumor in the liver, KI-67 6-8%. 4x3.1 cm mass plus additional small tumors. Differentiated and non-functioning. No origin...
Last active: Nov 10, 2024
NET (Lung + liver metastatis) Radical nephrectomy done for RCC
I would like to know if there is another one with same case as mine - 2 primary tumor. 1) NET lung 2) RCC recently...
Support Group: Kidney Cancer
Last active: Jan 9, 2023
After liver embolization: Looking for the best diet + food suggestions
We are looking for the best diet or food suggestions for after liver embolization. There is no nausea but still very weak. Monthly lanreotide shots...
Last active: Dec 11, 2023
Experience w liver metastasis & new small tumor peritoneal cavity
I have metastatic neuroendocrine tumors in the liver with no known origin diagnosed in Sept 2024 grade 2 KI-67 6-8% well differentiated non functioning. Been...
Last active: Sep 1, 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
Has anyone had experience with a Liver Transplant that has NET cancer?
Has anyone had experience with a Liver Transplant that has Neuroendocrine NET? My wife after chemo, surgery, PRRT, etc was suggested my our medical team...
Support Group: Transplants
Last active: Feb 28, 2025
Merkel cell-radiation effective on chest-new 2 cm spot on liver
Hi, I'm Kate. Age 49. I was diagnosed with Merkel Cell 4/6/22. Lesion on chest that spread near collarbone. Had surgery and multiple imaging showed...
Last active: Oct 2, 2023
Anyone had a large NET in the liver? What treatment did you have?
Has anyone had a large NET in the liver measuring 6 cm or more? What was the recommended treatment?
Last active: Jan 20, 2025
Should NET w/liver met patient stop rx that has Seratonin?
I have received Samotuline Depot injections every 28 days for a year. I have avoided Serotonin in my diet, but do I also need to...
Last active: Dec 16, 2025
Has anyone had Y90 treatment for NETS?
Next week the Dr will map the artery to my liver and the following week they'll inject microbeads of radiation to directly target the Nets.
Last active: 1 day ago
Is anyone taking cabozantinib (Cabometyx)?
I was dx with small bowel NET, met to the liver in 2018 (Carcinoid subset). Surgery removed the large primary tumor & some lymph nodes....
Last active: Mar 30 6:02pm
What are the latest developments in Zanzalintinib (311) with LANREOTID
What are the latest developments in Zanzalintinib (311) with LANREOTIDE ACETATE (4-week cycle) in treating pNET high grade 3 metastatic in liver for over 2...
Last active: Mar 17 8:57pm
Wondering if we are making the right choices in our NET fight.
I've been involved in the Mayo forum for a few years now, read a lot of great stories of improvement and life living with NET....
Last active: Dec 28, 2024