Neuroendocrine Tumors (NETs) Support Group

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...

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...

I came across a blog this morning that was “too good as not to share”. Let me preface this with the knowledge that I was...

Good morning all. I have a question.How do I know if Somatostatin is in my system? Is it necessary for a PETSCAN Copper 64 show...

My nephew recently became the third family member to have a NET diagnosis - his a Merkel Cell carcinoma. My father's was carcinoid of the...

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...

Right middle lobectomy in Nov '24 at Mayo Scottsdale. 3 carcinoids removed were all malignant and 1 lymph node involved out of 23 taken. DIPNECH...

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...

Does anyone have long term experience with larger appendix tumors? Especially women in relation to gynecological issues? My appendix tumor was well-differentiated and slow growing...

I have cancer f unknown primary. Tumour in neck lymph node with histology type Neuroendocrine with suspected primary SCLC based on pathology of neck tumour.Had...

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...

Hi, I was dx with pancreatic nets in 2010, had a resection in my pancreas. There were some nodules left. I had octreotide for carcinoid...

77 yrs old, no symptoms, diagnosis not clear. NET found in LL lung and lymph nodes in upper LL. Dotatate G scan no involvement in...

Good morning, I am an 81 yr old female & was diagnosed with stage 4 NETS in my liver metastasized from my lung in Dec...

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...

Hello All! I have had flushing for several years with alcohol, stress, emotions, heat/exercise, and some other foods. I also have cyclical diarrhea. In the...

NET, the TP crisis, a rant and a little humorI’m sure the irony of the TP “shortage” is not lost on most of us. As...

I'm a 41 yr old male and for the last 16 months I have had almost daily flushing (face, ears, chest, upper back/shoulders) episodes along...