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Neuroendocrine Tumors (NETs) Support Group

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Discussions (216)
FDG PET scan vs. 68Ga DOTATATE PET scan for neuroendocrine cancer
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...
Last active: Aug 21, 2023
I am one year out with my diagnosis just finished 4th round of PRRT
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...
Last active: Jan 22, 2025
Guide to Understanding Carcinoid Syndrome
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....
Last active: Mar 11, 2023
Facing Cancer Recurrence, PTSD & Acknowledging Mental Health
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...
Last active: Sep 24, 2024
Eating right with Neuroendocrine tumors
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...
Last active: May 21, 2023
Plummer Project
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...
Last active: Dec 13, 2017
A report from a follow up appointment
Hello ! Here is an update about what we discussed last week. I had an appointment ( second opinion) yesterday at Dana Faber. At least...
Last active: Dec 22, 2022
Seem to have Neuroendocrine tumors on every organ from Neuroblastoma
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...
Last active: May 14, 2024
Stress Management for Cancer: Free online course from Mayo
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...
Last active: Jul 25, 2022
Diagnosed with Carotid Body Tumor
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...
Last active: Nov 29, 2024
Root canal without Epinephrine
Sorry I missed the group last night I so wanted to make it home from the dentist to discuss my situation I have a functioning...
Last active: Jul 8, 2025
Atypical carcinoid tumour of the lung
Hi, I live in part of the U.k. and had an op to remove an atypical carcinoid tumour from my inferior lobe at the end...
Last active: Nov 12, 2025
Should I see a specialist?
Hello! I am 43 F and having episodes of hypoglycemia for years that have gotten more frequent. I’m also constantly hungry. I mentioned this to...
Last active: Feb 10, 2024
Have you ever had hiccups with or after chemotherapy?
We all know what hiccups are, right? They are involuntary contractions of the diaphragm — the muscle that separates your chest from your abdomen and...
Last active: Dec 6, 2025
How do you mentally handle reoccurrence?
Hi, I am struggling. I just had my 6 month surveillance mri for my pancreatic net. (It has been 3 years since my distal pancrectomy...
Last active: Mar 11 12:38am
Diagnosing or Ruling out Insulinoma
Fairly new to this forum as I navigate the slow process of diagnosing or definitively ruling out an Insulinoma. First visit with an endocrinologist last...
Last active: Aug 7, 2025