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Public Support Group 253 total results
Discussions (29)
Carcinoid syndrome; NET not found
I have been receiving treatment for carcinoid syndrome for 3 years. It is believed tumor is in small intestine. Doctors waffle back and forth about...
Dotatate lights only in liver, but report says metastatic to liver?
Cat Scan shows 4x3 cm mass in liver and lesions in other lobe. Biopsy results neuroendocrine liver tumor. KI-67 6-8%. Synaptophysin and CK Cam positive....
Mother might have neuroendocrine tumors, is being told she has IBS
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,...
Neuroendocrine tumor: What tests are used for diagnosis?
I had chromograinin A test done which was very high and 5-HIAA been waiting for results for over 2 weeks, I have a lot of...
Possible NET with No Evidence of Tumor: Mediastinal Mass
Hello All! I have had flushing for several years with alcohol, stress, emotions, heat/exercise, and some other foods. I also have cyclical diarrhea. In the...
Atypical pulmonary carcinoid
My twin sister had an incidental finiding of atypical pulmonory carcinoid 2 weeks ago. The following are reports of her diagnosis. Se is due to...
Small Bowel Neuroendocrine Cancer, Metastasis to Mesentery Recurrence?
I was diagnosed in ‘21 (51 y/o) with SB net and metastatic tumor in the mesentery lymph nodes. All successfully resected. The metastasis in mesentery...
What should I do? Carcinoid symptoms but no answers.
I'm a 41 yr old male and for the last 16 months I have had almost daily flushing (face, ears, chest, upper back/shoulders) episodes along...
Initial imaging and tests; what to expect after initial NETs diagnosis
Context: I've known about my NETs diagnosis for less than 2 weeks. A very small NET was discovered during a routine colon cancer screening colonoscopy;...
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