How rare is it???

Posted by pokeymama @pokeymama, 3 days ago

I have stomach nets, sibo (small intestinal bacterial overgrowth), Autoimmune Atrophic gastritis and Stomach nets. I’m currently on the wait and watch protocol for the nets with monthly Octreotide treatments. Cannot take the antibiotics for the sibo (caused c-diff in the past), and have absolutely no advice from doctors about how to treat or live with the disease and symptoms of the AAG… My GI doc says he doesn’t know what more to do and I feel stuck and very sick of being sick, lol

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

Turkey | @tomrennie | 3 days ago

What tests concluded the diagnosis of nets?

pokeymama | @pokeymama | 3 days ago

In reply to @tomrennie "What tests concluded the diagnosis of nets?" + (show)

Endoscopic biopsy and gallium pet/ct

vinnie694 | @vinnie694 | 3 days ago

After my GI doctor diagnosed my NET’s , my care was turned over to a NET specialist at Mayo, where he explained quite a few options of treatment for me.. After speaking with that team I had a more positive outlook on living with this.. I fully recommend seeking a NET Specialist. Hope and prayers with you..

fraaseo | @fraaseo | 3 days ago

My suggestion would be for you to see a NETS specialist, they are more familiar with NETS & surely will have more options for you. Have you had your hemoglobin & Hematocrit checked to find the source for the fatigue? I was very fatigued & ended up having weekly infusions to bring up my levels as the shots didn’t work. Good luck to you!

lindabees | @lindabees | 2 days ago

I'm sorry you're going through this. It sounds like your doctor has pretty much admitted that he doesnt know how to treat this. As mentioned it is very important that you consult with an oncologist who, if not a specialist is at least well versed in NETS. This is still a fairly rare disease and needs to be treated by someone who knows alot about it.
You can search for a net specialist by state here
https://netrf.org/for-patients/neuroendocrine-tumor-doctor-database/
Also because it is rare its very important that you learn as much as possible about it and the available treatment options. You need to know enough to gauge if what your doctor - including a net specialist - makes sense or not. Never be afraid to question the doctors.

Here's some great resources for you
These as well as the netrf site I linked have tons of educational materials and past conference videos to help you
https://netcancerawareness.org
https://www.ncf.net/newlydiagnosed

cu2 | @cu2 | 2 days ago

Never feel stuck because there are other options out here plus if you’re able to do some research and find you another doctor as well. I see a lot of people on here have suggested that you see a NETS Specialist that specializes in Neuroendocrine tumors would a great place to start.