Neuroendocrine Tumors (NETs) Support Group

I would like to know if there is another one with same case as mine - 2 primary tumor. 1) NET lung 2) RCC recently...

Has anyone had this LNET treated with Radiation and what was your outcome?

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...

I have been diagnosed with both NETs-Lung and DIPNECH. Do I need two teams to be involved since I have two different conditions or one...

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...

Up until recently I have been posting under Blood disorders, because I was overloaded with IV iron infusions by a careless doctor who gave me...

Hi as most of ye no I've had typical carcinoid in my lung fully removed I've had 2 lobes removed because of where tumor was...

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...

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

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...

Hi I've been diagnosed with a benign typical carcinoid tumor in my bronchi tube in right lung was found when I went to A&E with...

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...

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...

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...