New diagnosis of grade 1 NET of stomach. What do I do now?

Posted by tiger11073 @tiger11073, Jan 27 5:22pm

I was recently diagnosed with a grade one NET of my stomach after an endoscopy for autoimmune gastritis. My local doctor is unfamiliar with these types of tumors. He thinks I should just monitor it. I am uncomfortable with this, especially having had a previous history of thyroid cancer. What should I do next?

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

dbamos1945 | @dbamos1945 | Jan 27 7:16pm

@tiger11073: You have good instincts in not wanting to “just follow” your cancer tumor. Those of us with Neuroendocrine tumor cancer I am sure will agree with my suggestion that you will most benefit from a consultation with a NET Gastro Specialist to guide you in treatment decisions.
You will need to have the medical report that gives this diagnosis as well as copies of all test reports you have had recently as the specific details will afford your NET specialist ability to help you.
NET cancer tumors are different from other cancers and regular medical Oncologists do not have the experience with NETs. Most NET tumors are very slow growing and with prompt treatment you may be able to have the primary surgically removed.
This group at Mayo Connect are here to help you. You will find more groups in researching this disease. You are not alone.

tiger11073 | @tiger11073 | Jan 28 3:13pm

Thank you so much!
How do I find an NET Gastro Specialist?

Turkey, Volunteer Mentor | @tomrennie | Jan 29 12:23pm

In reply to @tiger11073 "Thank you so much! How do I find an NET Gastro Specialist?" + (show)

@tiger11073 Hi and welcome to Mayo Connect. Here is a link to find a NET specialist:
https://www.carcinoid.org/for-patients/treatment/find-a-doctor/
Please let me know, if you have any questions.

mcharlesfrancis | @mcharlesfrancis | Jan 30 7:20am

Go to oncologist that specializes in pancreatic cancer all oncologists are not the same

tjstaufr | @tjstaufr | Feb 2 6:43am

In reply to @tomrennie "@tiger11073 Hi and welcome to Mayo Connect. Here is a link to find a NET specialist:..." + (show)

@tomrennie I am seeing Dr. Halperin at Emory in Atlanta. Excellent Dr

jeanyves7357 | @jeanyves7357 | Feb 2 3:55pm

I definitely would not wait to see what happens. It could spread to other areas. I would get a referral to an oncologist.

mcharlesfrancis | @mcharlesfrancis | Feb 3 7:45am

I had a patient I was talking to at Emory University. They may have good oncologist, but the only way they can communicate was through their my chart and it took two or three days for them to get back to him and when he was in extreme pain needed a nerve block make sure you’ll be able to get a hold of your oncologist or a nurse navigator other than using my chart and having to wait