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Neuroendocrine Tumors (NETs) | Last Active: Jan 31, 2023 | Replies (18)
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Hello @lupitaromero and welcome to the NETs discussion on Mayo Connect. I'm so glad that you have joined this discussion group and have been sharing information based on your experiences. I also, have had three NETs in the upper digestive tract (duodenal bulb), however, I've had no carcinoid syndrome symptoms.
If you are comfortable sharing more, when was your first NET discovered? Were you having any digestive issues at that time that led to the diagnosis?
Replies to "Hello @lupitaromero and welcome to the NETs discussion on Mayo Connect. I'm so glad that you..."
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Good night Teresa
I’m very glad to share my experience with NET’s, hoping it could be useful to other people.
At the beginning, the gastroenterologist thought it was gastritis and menopause (stomach pain, diarrhea, sweating, “red cheeks”, I don’t remember the others symptoms because I confused the doctors), so he sent me an endoscopy. During the process, they found 3 “anormal tumors”, he took the biopsy and 3 weeks later the results were “NET”.
At México, there’s an hospital called INCAN, the doctor decided to send the biopsy to clasifícate the NET. The result in this investigation center was Gastric NET, clase 2, 20%, active, with carcinoid symptoms.
All of this happens between November 2018 through January 2019.
With the exactly classification, I started the treatment (Sandostatin LAR30), one shot every 4 weeks.
The first 6 months were a complete messed (severe diarrhea, cold-flu, nausea, vomiting, fever, very tired, headache, sleeping all day), just one day after each shot.
Cause Covid, the treatment take 2 years (the hospitals were full with Covid patients).
I had 3 PET CT during those years, one year each 6 months and, since 2023 yearly.
The last results (at November 2022) was: No evidence of activity 🥰😃
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