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Possible NET with No Evidence of Tumor: Mediastinal Mass

Neuroendocrine Tumors (NETs) | Last Active: Nov 2, 2021 | Replies (34)
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@andre1221

Good morning. I see Dr. Jason Starr at Mayo Jacksonville, Fl. In the last two years, they have done extensive work ups to include exploratory laparotomy. I’m currently on Lanreotide 180mg X 21 days. Double butt darts suck but they are working lol. Also on 300 mcg of Octreotide as needed. I’m happy to help you or any others on this path. So sorry for what you and the others are dealing with. ~ André

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megansims | @megansims | Oct 30, 2019

Andre, Thank you for sharing. What was your diagnostic experience? Have they ever found a tumor? Or is it just symptoms and positive testing? Did you have a WREN lab. NETest done? They seemed fairly convinced that my symptoms and biomarkers were highly suggestive of Carcinoid Syndrome, but seem perplexed by the fact that they cannot find a tumor. Anyway, thanks for sharing!!

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