Hello @mamadneuroendocrine and welcome to the NETs support group on Mayo Connect. I'm glad that you found this forum. You are asking good questions. The treatment for NETs is varied. Surgery is the usual option to remove the tumor and often follow up with monthly injections and in some cases PRRT (a type of chemotherapy used specifically for NETs). The treatment varies depending on the type of NETs as well as the experience of the oncologist. I see that @pavlina60 has already shared her experiences with you. I would also like to invite @kim1965 to this discussion as his wife has a similar diagnosis as you and he might be able to share their journey with treatment and @ahtaylor who has had NETs in the pancreas for several years.

Many of us, including myself, had no symptoms when we were diagnosed with NETs, but the NETs were found incidentally (during scans or check-ups for other health issues). Was this your experience as well or were you having symptoms?

One of the most important considerations with NETs is to have at least one consultation with a NET specialist. Not all general oncologists have been trained to treat this rare form of cancer. If you would like to get a consultation with a NET specialist at one of the three Mayo locations, here is a link to their appointment information, http://mayocl.in/1mtmR63. If for any reason you cannot consult with a Mayo Clinic NET specialist, here is a website where you can find NET specialists worldwide, https://www.carcinoid.org/for-patients/treatment/find-a-doctor/. Generally, after a consultation with a NET specialist, you can follow up with your local oncologist.

How are you feeling, @mamadneuroendocrine? What are your most troublesome symptoms right now?