Support Groups

Neuroendocrine Tumors (NETs) Support Group

Public Support Group
1,922 total results
Discussions (159)
Tumor growth in three month follow up MRI
Interested in others experience to understand imaging. Radiologist reports "Hepatic metastases have mildly increased in size from prior CT Dec 2024 and MRI November 2024."...
Last active: 26 minutes ago
PRRT for NETs: Questioning whether I should continue or not
I’m questioning if I should continue PRRT for NETs on my liver. I feel much worse after starting PRRT
Last active: Oct 22, 2023
What do I need to know about NETS?
What do I need to know about NETS? I would like to know about this cancer. it started in small intestine and has gone to...
Last active: Sep 11, 2023
Help: What is a cancer symptom or not? Who to see?
I was diagnosed with a neuroendocrine tumour on my small bowel in 2014. This was found as I went into crisis. In June 2014 my...
Last active: Jun 5, 2019
Carcinoid cancer in intestine or NETs (Neuroendocrine Tumors)
2016 my husband lost his colon and part of his small intestine following an colonoscopy. He now has an ileostomy which makes treating the cancer...
Last active: Mar 16, 2019
NETS tumor in left adrenal gland: Any advice? Hope?
My wife was found to have a tumor in the left adrenal gland and it has complicated her liver and is swelling, what do you...
Last active: Aug 21, 2022
I recently learned of histotripsy treatment for metastatic NETs
Below are links with additional information.https://l.smartnews.com/p-15eSVMB/JS1UQ5Histotripsy treatment, FDA-approved therapy that kills cancer using sound and water, led by team at Providence Mission Hospital | abc7.comhttps://abc7.com/amp/post/histotripsy-treatment-fda-approved-therapy-kills-cancer-using-sound-water-led-team-providence-mission-hospital/15648669/Below...
Last active: Dec 31, 2024
Anyone have experience with Acites?
I have been diagnosed with PNets grade 2 that metastasized to liver. The past few months I have been dealing with acites. Currently doctor is...
Last active: Dec 28, 2024
Anyone gone to Mayo Clinic in Rochester Minnesota for carcinoid tumors?
has anyone used mayo clinic in Rochester Minnesota for carcinoid tumors. the diagnosis was carcinoid tumors in the liver. I am looking for the best...
Last active: Apr 5, 2023
GI Net stage 4 advanced: Is it incurable?
Hello I was diagonised with Neuron drone Tumor Cancer April 2024 from having a bowl obstruction surgery which was the tumor in the intestines that...
Last active: Jul 28, 2024
Where can I find a carcinoid syndrome specialist in Florida?!
Recently I had a positive 5-HIAA urine test and a 64 CU Dotatate PET scan that lit up parts of duodenum and found a 4mm...
Last active: Jun 16, 2023
Stage four high-grade neuroendocrine carcinoma
I am looking for anyone that has dealt with this diagnosis and received treatment. My husband was diagnosed July 2018 and we’ve had two reoccurrence...
Support Group: Lung Cancer
Last active: Dec 18, 2023
Anyone have experience with cabozantinib (Cabometyx)?
I am interested in hearing people’s experiences with cabozantinib. I was diagnosed January 2020, grade 3, well-differentiated, unknown primary with tumors in liver, pancreas, lungs,...
Last active: Mar 14 1:57pm
Living with Neuroendocrine NETS, any advice?
Hi I am new here and just want to have a good place to chat with people that share my thoughts and concerns about my...
Last active: 1 hour ago
I’m living with Pancreatic Neuroendocrine Cancer
Hi I’m lovelea. And I just joined Mayo support group. It will be nice to ask others what I can expect and learn from. My...
Last active: Mar 7 6:42am
Metastatic NeuroEndocrine Grade 3 - ki 80% -
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...
Last active: Jan 21, 2024
Anyone have hair loss with lanreotide?
After 8 months on lanreotide I am getting the diet down and no longer losing weight, but my hair loss is beginning to be noticeable....
Last active: Nov 4, 2024
Flushing after NET surgery
Hi! I had pancreatic NET surgery on Feb.1. Recovering nicely at home. Never had flushing before surgery. Now I experience flushing almost every day. Should...
Last active: Mar 25, 2023
Well differentiated Neuroendocrine Grade 2 in rectum
Hi there, I was recently diagnosed with a Neuroendocrine tumor in my rectum. After a rectal biopsy and correlating morphology and Immunohistochemistry, the diagnosis was...
Last active: Mar 25 1:08pm
Questions on Recurrence & Likelihood of Multiple NETs
Hello All, I'm new to the NET world and feeling very lost (uninformed). Mine was found in my appendix in the pathology report by chance...
Last active: Sep 29, 2022