Neuroendocrine Tumors (NETs) Support Group

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...

Help! Mom is 82. We’re at Orlando Health. Came in 2 weeks ago for pain in uterus through ER. They thought mom had tuberculosis at...

I have written on this form before. I am 71 and was diagnosed with very slow growing neuroendocrine tumors on my lungs 8 years ago....

I was diagnosed with DIPNECH a few days ago, following lung biopsies. I will be having a second PET scan, called Detectnet Dotatate on August...

I have had non-alcoholic cirrhosis of the liver for 7 years. I’m doing really good but after a lung biopsy last week, I have also...

Hi, my name is Anita. I found out I had lung NETs in March this year. I was sent for a CT scan to check...

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...

Good morning. My prayers and blessings to all on this page of interest. This is a new journey for me. Underwent a lung biopsy due...

Most of what I am reading about DIPNECH deals with people who have not progressed as far as I have. I've been on supplementary oxygen...

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...

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...

I was diagnosed with MCC and had surgery and followed with 30 treatment of radiation on the right side of my head, cheek and neck.The...

I had chromograinin A test done which was very high and 5-HIAA been waiting for results for over 2 weeks, I have a lot of...

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...

I've been on the fence whether to have genetic testing. My concern is how it might affect my future insurance coverage, and possibly, that of...

Hi everyone i was diagnosed w a carcinoid tumor of the appendx. It was removed 8 m again along w my rt colon. Fast forward...

We are traveling to Mayo from Indiana. My wife needs surgery to remove a carcinoid tumor from her right lung. We have an appointment for...

Hello all, I wanted to start a discussion on a finding from a CT Scan I had yesterday and hope I am in the right...

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...