@lenorahaston

I would like to join the others in welcoming you to the NETs discussion on Mayo Clinic Connect. It is so good that you are reaching out to others with NETs, it helps to ease that "all alone" feeling that comes with a rare diagnosis like NETs.

It sounds like you have received some good information from reading the posts on this site. I would also like to invite you to a NETs support group that meets on Zoom. It is held on the first Thursday of each month, beginning at 5:30 EST, and originates from Mayo's Jacksonville campus.
It is led by a Mayo Clinic social worker, Michelle Walsh, @michellewalsh.

Closer to the time of the meeting a registration link will be provided and once you register, you will be sent the zoom link.

My experience with NETs has involved three surgeries of the upper digestive tract with no apparent metastasis at the present time. My only treatment has been surgery with no other therapies.

I can understand your concern if your symptoms continue to persist even after beginning the monthly injections. I'm guessing that you are experiencing carcinoid syndrome symptoms such as diarrhea, flushing, etc.

Is this the case?