Anyone have a neuroendocrine tumor in small intestine?

Posted by jestjohn @jestjohn, Dec 12, 2023

Are these tumors benign? I was told it is small and most was removed by endoscopy but in an area in the duodenum where surgery is risky. Does anyone have this diagnosis? I’m afraid and don’t know what to believe. It hurts at times. I’m scheduled for a PET/CT scan this Friday!

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

Teresa, Volunteer Mentor | @hopeful33250 | 4 days ago

In reply to @kenb58 "No, I have not. I guess I just want to believe that it's gone. I'm sure..." + (show)

Hello @kenb58,

I agree with @colleenyoung, about having a list of questions to ask at your upcoming appointment. If you would like some help in approaching your 4/21 appointment, I'd encourage you to read a Connect discussion on the topic of "Keys to a Successful Doctor's Appointment." Here is the link to that discussion which also includes a video, https://connect.mayoclinic.org/discussion/keys-to-a-successful-doctors-appointment/

Here is a listing of NET specialists throughout the country, https://www.carcinoid.org/for-patients/treatment/find-a-doctor/. It is always a good idea to have at least one consultation with a NET specialist. Often a virtual appointment is possible and then the NET specialist can work with your local oncologist to develop a treatment plan that is best for you. The NET specialists at Mayo Clinic are listed in the link above. If it is possible to consult with a Mayo specialist, here is a link with appointment information, http://mayocl.in/1mtmR63.

I look forward to hearing from you again. Will you continue to post with your questions and concerns?

kenb58 | @kenb58 | 4 days ago

In reply to @hopeful33250 "Hello @kenb58, I agree with @colleenyoung, about having a list of questions to ask at your..." + (show)

I feel very fortunate that the Oncologist that I am seeing is also the head of the Neuroendocrine Center of Mercy Hospital in Baltimore MD.

kenb58 | @kenb58 | 3 days ago

Have you or do you know of anyone that has or had a NET on or around eyelid

Teresa, Volunteer Mentor | @hopeful33250 | 2 days ago

In reply to @kenb58 "Have you or do you know of anyone that has or had a NET on or..." + (show)

@kenb58

I do not know of anyone who has mentioned a NET near the eye or eyelid. However, you can start a conversation with the title, "NET near eyelid" and post about your experience. Perhaps someone will respond.

katinka58 | @katinka58 | 20 hours ago

My husband has a neuroendocrine tumor in the small intestine found by accident as they were scanning for an on the job injury, that was in 2021. The cancer metastized to the liver & spine where he had a 2” tumor removed from his spine. He received Octreotide injections monthly for about 18 months & has recently been changed to Lanreotide injections monthly .

katinka58 | @katinka58 | 20 hours ago

My husband has a neuroendocrine tumor in the small intestine found by accident as they were scanning for an on the job injury, that was in 2021. The cancer metastized to the liver & spine where he had a 2” tumor removed from his spine. It also spread to his bones. He received Octreotide injections monthly for about 18 months & has recently been changed to Lanreotide injections monthly .