Neuroendocrine Tumors (NETs) Support Group

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...

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...

I had a stage 1 nodule removed from left lobe now have a new 7mm in lower lobe 3 months after surgery and they said...

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

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...

This is my story....A lobectomy of upper right lobe of the lung in 2016 It returned in 2023 with a tumor in a lymph node...

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...

Hi,I live in Canada and I wonder up to how much it can cost for a possible surgery.I have a mixed adenoneuroendocrine carcinomas (MiNEN), with...

I received the results of a lung biopsy last week & it showed DIPNECH. I see an oncologist next week to discuss treatment options. Pulmonologist...

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...

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...

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...

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

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...

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...

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'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...