Neuroendocrine Tumors (NETs) Support Group

Sorry if this has been discussed before, but I was interested in hearing peoples experience with PRRT (Peptide Receptor Radionuclide Therapy)? I live in Georgia...

My husband's labs are all indicating NET. His Chromogranin levels are 2474 and repeated is 1944. PET Scan did not light up. Next week is...

I am seeking input about experiences with losing the tail of the pancreas and spleen. Has this been the right choice for you? I will...

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’m scheduled for a zoom call with a nurse Jan 8 in preparation for robotic surgery of a 13mm typical neuroendocrine carcinoid. I prefer to...

I have stomach nets, sibo (small intestinal bacterial overgrowth), Autoimmune Atrophic gastritis and Stomach nets. I’m currently on the wait and watch protocol for the...

I have been able to get by day to day with my presciption for Tincture of Opium (Paragoric). This is the miracle drug, I have...

Maybe this is rant post, but my mom aged 56 has been having diarrhoea and flushing since past 7 months and I've seen three gastroenterologists,...

I am currently living in Panama, without insurance and have been diagnosed with NETS, biopsied and they believe its origin is the small intestine ....

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 would be curious to see if there are any laymen articles regarding the use of FDG PET scan vs. the Dotatate PET scan. In...

It’s been a long path, years of flushing, stomach cramps and diarrhea that came and went with no warning or explanation. Had a resection of...

To those in our Mayo Connect Carcinoid/NET group, @amyh2439 @tresjur @joannem @gaylejean @lucci50 @derekd @gulzar @joanney @jenchaney727@dzerfas @lorettanebraska @wordnoid @trouble and @upblueeyes @ahtaylor @heidilynn4 @junebug15....

It's extremely difficult to face the fact of recurring cancers. After treatments we try and get away from it all and live our life. Then...

Hello all, I’ve noticed that there have been quite a few questions on here about what to eat and what to avoid when you have...

With the implementation of the 'Plummer Project', moving all Mayo health records to the Epic system (from GE), a $1.5 billion project, I wonder what...

Hello ! Here is an update about what we discussed last week. I had an appointment ( second opinion) yesterday at Dana Faber. At least...

Born 1968 lived with Neuroblastoma 2 years. The tumors where the size of a baseball and 2 bananas along side my backbone. I had rare...

Mayo Clinic's Cancer Education Center just uploaded a new self-learning course to help people (patients and caregivers) living with cancer to manage stress.You can work...

I was recently diagnosed with a Carotid Body Tumor. I live in Ohio and there isn't anyone that is experienced in my diagnosis. I am...