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New to Mayo: MEN1 with duodenum NET G1

Neuroendocrine Tumors (NETs) | Last Active: Oct 8, 2021 | Replies (15)

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@mgreene

I, too, was told after 10 years I could relax. But in year 10, my gastroenterologist saw a “skin tag” in the same location as original rectal carcinoid. So now, Teresa, you have caused me to have questions. If they are too personal, please just ignore me. Are “increased pancreatic cysts” related to the duodenal tumors? If so, is there no treatment for them? Are they believed to be harmless? When you say bone pain, can you differentiate from aches caused by, say, flu or osteoarthritis or inflammation? Thank you.

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Replies to "I, too, was told after 10 years I could relax. But in year 10, my gastroenterologist..."

Hello @mgreene
At this point the pancreatic cysts appear to be harmless, but given my history they are watched with an MRI periodically. The bone pain may be related to osteopenia or low bone mass. Each person's experience is different. Is your doctor a NET. specialist? Try to take care of yourself, ask your doctor questions and get second opinions if you need to, but try not to read too much into the experiences of others.

If you have any other questions, please let me know.