New to Mayo: MEN1 with duodenum NET G1

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.

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.

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.

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.