Neuroendocrine Tumors (NETs) Support Group

It has been a frustrating process with the dr office handling my case. Fighting to get approval for a NET Spot Scan. I’ve been having...

HiBeen diagnosed with 9mm lung nodule lower left node. Been told it was on old ct since 2017/18 at 4mm and that they are going...

I am 75. Had right upper lung lobe removed in August 2022Have multiple 5 cm carcinoid tumorettes in lungCould a mass on my adrenal gland...

Why does it seem once you get one of these cancers thyroid cancer, lung cancer or breast cancer you all 3? I have had all...

After all the radiation, my oncologists recommend 30 radiations and numerous related ct scans. I wonder if these tumors having been there, one the size...

One doctor suggested that I have DIPNECH I do have small carcinoids throughout my lungs. They were discovered when an Adenocarcinoma and my top right...

I was diagnosed last year with a lung tumor and had my left lower lobe of my lung removed. I was diagnosed with a carcinoid...

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 in April 2016 with a Typical Carcinoid Tumor in my right lower lobe, approx. 3 cms. It has remained stable, per most...

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...

I had a typcial stage 1 NET. I had a lobectomy. I started having chills 6 weeks post op. Antibiotics helped. I have fluid around...

One, I'm curious about NETs pain. Do they themselves cause pain or only when they are pressing on or blocking other things? I have lung...

I had my first Chromogranin A blood test in 2021. 2 months after I had the lower lobe of my left lung removed due to...

For those of you who’ve had a lung carcinoid removed, how did you decide on a particular thoracic surgeon or center? What helped you decide?...

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...

Does anyone know what the different colors mean or how you are placed in said group? I had a lung Tumor so they put me...

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...

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...

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...

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...