New to Mayo: MEN1 with duodenum NET G1

Posted by markbrinkley @markbrinkley, Dec 11, 2018

Dx- MEN1 with duodenum NET G1. Heading to Mayo on 12/17. Just initial evaluation and a couple of labs set. At appt set up they said be prepared for 4-5 day stay. What will the rest of the time be like if nothing set up for now? Will there be a lot of just waiting?

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

@markbrinkley

Took abit to get referred to NET team, as I started out in general GI. Got the tests ordered and accomplished to further investigation. Good news in that area effected is limited based on DOTATATE scan. Duodenum, pancreas and possible antrum stomach. EUS and pathology confirmed gastrinoma in duodenum (small 6mm) and pancreas with cluster of micro tumors (10mm). All in close proximity. Next stop is oncology to determine best approach. 1/11 is next appt due to holidays.

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Hello @markbrinkley

From your last post you were to see an oncologist for your NET on Jan.11. I was hoping you could provide an update, as you are comfortable doing so. Did that appointment go well?

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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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@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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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.

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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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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?

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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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Hello @markbrinkley

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

Are you still on hold regarding possible surgery?

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