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 | 1 day 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.

kenb58 | @kenb58 | 1 day ago

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

kenb58 | @kenb58 | 2 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.

Teresa, Volunteer Mentor | @hopeful33250 | 2 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 | 2 days ago

In reply to @colleenyoung "@kenb58, I moved your post and replies to this existing discussion about small intestine NETs. -..." + (show)

No, I have not. I guess I just want to believe that it's gone. I'm sure that's crazy

Colleen Young, Connect Director | @colleenyoung | 2 days ago

In reply to @kenb58 "I was diagnosed in January that I had a NET. I had CT Scan and PET..." + (show)

@kenb58, I moved your post and replies to this existing discussion about small intestine NETs.

- Anyone have a neuroendocrine tumor in small intestine?https://connect.mayoclinic.org/discussion/anyone-have-a-neuroendocrine-tumor-in-small-intestine/

I did this so that you can read previous posts and connect with members like you.

You can also use the keyword "small intenstine" in NETs group search to find more related discussions: https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/?search=small+intestine#discussion-listview

Ken, have you started a list of questions for your upcoming appointment?

kenb58 | @kenb58 | Mar 22 5:39pm

In reply to @jlsgt "Why did you have a CT/Pet in the first place? Did or do you have symptoms?..." + (show)

I had a colonoscopy, the Doctor noticed what he called a polypoid. He took a biopsy and the Pathology Report report confirmed a NET. Then I had CT scan to determine if any others were visible. They found a total of three in the illeum. The Doctor spoke to Oncologist and they requested a PET Scan. They then decided course of action was to do the Right Hemicolectomy. The Pathology report confirmed 8 Lymph Nodes had NET Tumors out of the 24 tested. I have had No symptoms

jlsgt | @jlsgt | Mar 22 4:49pm

In reply to @kenb58 "I was diagnosed in January that I had a NET. I had CT Scan and PET..." + (show)

Why did you have a CT/Pet in the first place? Did or do you have symptoms? You may or may not have surgery right now. There are teams of doctors that specialize in this type cancer. Did the pathology report come back as positive for NETs also? That can be critical because some insurance cos. want it verified under a microscope. I have NETs in the mesentery/small bowel also. I'm on a monthly injection called Lanreotide. Many people here on it also. This type cancer can be very slow growing. People can live a long time with it. Good luck.