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Initial imaging and tests; what to expect after initial NETs diagnosis
Neuroendocrine Tumors (NETs) | Last Active: 1 day ago | Replies (20)Comment receiving replies
I was diagnosed with NET G1 phase accidentally as I underwent a surgery for anal fistula. In order to exlclude the crohn's disease, I had a colonoscopy and found my NET because of this when I was 28 years old and male. Now, I am 29 years old. I don't have any symptoms actually, but I think I do need to do further medical examinations and periodically having colonoscopy every 6 to 12 months.
Replies to "I was diagnosed with NET G1 phase accidentally as I underwent a surgery for anal fistula...."
Hello @qwerrqaz and welcome to Mayo Clinic Connect. I see that @sophiarose and @mmar2025 have already responded to you. Their suggestions for follow-up testing and for finding a NET specialist are good. As you are young and newly diagnosed, I would recommend a consultation with a NET specialist as your first step. Mayo Clinic has NET specialists at all three of its locations (appointment information is available at http://mayocl.in/1mtmR63).
If it is not possible to be seen at a Mayo facility, here is a link from the Neuroendocrine Tumor Research Foundation with NET specialists in the U.S.: https://netrf.org/for-patients/neuroendocrine-tumor-doctor-database/page/8/.
As NETs are a rare form of cancer, it would be good to educate yourself as much as possible regarding follow-up tests and scans. What type of follow-up has your current medical team suggested?
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@qwerrqaz That you have caught it early is very positive. You do need further testing more precise to Nets to make sure it is isolated. And, yes, a net specialist at a major medical center is the best course of action.