Neuroendocrine Tumors (NETs) Support Group

Hey all, I’m struggling with pain and could use some support.I had a LEEP surgery 5 months ago which began a daily battle with severe...

My husband was diagnosed with carcinoid on 1/18/17. He had surgery on 2/3/17 to remove 18" of his ileum small intestine (36 small tumors were...

Hello. I was diagnosed with NETs in February 2023: stage 4, grade 2, well-differentiated low-grade primary 5cm tumor in small intestine, Ki-67 5.4%, with METs...

Hello to all of you who have had cancer diagnosis and treatments.The past couple of months I have been on a roller coaster ride with...

I would like to share some of my symptoms I experienced when I was first diagnosed with High Grade Neuroendocrine Carcinoma in my parotid gland....

Hello everyone. I am new to this site and this is my first post. I had a routine colonoscopy in March and found that I...

My husband was diagnosed with MEM and type one in 2017. He had a modified Whipple surgery in 2018 or they removed his pancreas, Splaine,...

Does anyone have long term experience with larger appendix tumors? Especially women in relation to gynecological issues? My appendix tumor was well-differentiated and slow growing...

Hi UK based where mcas is poorly understood I have been diagnoses with autoimmune gastritis in the last few weeks Symptoms over the last few...

I was diagnosed in May with aggressive NET, which started in the colon and had already spread to the liver with a 6 inch tumor....

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...

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...

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...

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...

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

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

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....

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...