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Initial imaging and tests; what to expect after initial NETs diagnosis
Neuroendocrine Tumors (NETs) | Last Active: Jul 27 6:12pm | Replies (13)Comment receiving replies
The first thing I would do is demand a gal68 dotatate PET scan. Depending on the results, I’d postpone any surgery until I was able to see the NETS Specialist/Surgeon (that’s just from my 3 year experience/history with GI NETS Mets). They are specialists & the best chance of getting/keeping your NETS controlled. Your symptoms also mimic classic NETS, diarrhea & flushing. Keep in touch, this group is very helpful!
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Interesting. I thought that the Mayo folks would probably order whatever scans they thought would be most appropriate for NETS. I'll have to be sure that I've shared enough information with those NETS specialists so that they can tell me what scans or tests would be most appropriate. I would not want the doctors to go against what they think is the right set of tests, but I would like to know more about why they don't think a PET scan is something that should be part of the plan.