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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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@markbrinkley

Very well. Genetic cancer team was extremely informative. Based in my present quality of life we will monitor with close surveillance, next scans in 6 months. Multiple micro nets and cysts throughout pancreas body; objective is to monitor for growth, expecting 2mm growth per yr as baseline. Growth faster or new nets will require further evaluation and consideration of surgery. Surgery will impact quality of life so plan is to delay until necessary to intercept mets. Dr Thor indicated the ability to monitor has improved dramatically so that treatments are planned strategically thereby improving overall survival and quality of life. Since that time, as the gastrinoma was trimmed significantly I have reduced ppi from 120mg/day to 40mg/day. I am still in wean process but will continue to reduce until symptoms require treatment. I am hoping to move to H2 vs ppi if possible due to the sudr effects of long term ppi use. Overall excellent outcome with optimistic treatment plan.

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Replies to "Very well. Genetic cancer team was extremely informative. Based in my present quality of life we..."

Thanks for your update, @markbrinkley. That all sounds very good. I understand how surgery will affect quality of life and the monitoring suggested by Dr. Thor, should be good.

I gave up taking a PPI and have been taking Zantac for a number of years since my second NET surgery. If you combine an H2 with a good diet plan, it should work well for you.

It sounds like Dr. Thor offered you a good plan. I'm glad that you were satisfied with your trip to Mayo.

Hello @markbrinkley

I noticed your post from a couple of years ago. Your medical team was going to be following some NETs as well as polyps. How are you doing?

I hope all is going well. When it is convenient for you, will you post an update?

Hello @markbrinkley

How are you doing? Are you still following up with Mayo Clinic?

Are you still on hold regarding possible surgery?