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Neuroendocrine Tumors (NETs) | Last Active: Aug 4, 2025 | Replies (11)
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Hi @persevere76 - nice to meet you. I was diagnosed with MEN1 about 5 years ago. I have since undergone parathyroid surgery, a total pancreatectomy, etc. and am being followed routinely for other NETs. I have not experienced adrenal adenomas as of yet and would be happy to share what I have learned over the past 5 years. Keep the faith!
Replies to "Hi @persevere76 - nice to meet you. I was diagnosed with MEN1 about 5 years ago...."
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Hello Matt2024 and others with MENS1. Similar experience: parathyroids removed and one relocated to inner arm. Total pancreatectomy, gallbladder and spleen too. Pituitary tumor surgery and one laser treatment then lanreotide for a year. That was 2011-2013 - have been doing fine - Two weeks ago the PET Scan Ga68- shows NET at appendix. All diagnosis and surgeries at Mayo Jax. Just sharing in case this is of use to you and yours. I have an appt with oncology in July.
Yes- keep the faith!