Anyone have a neuroendocrine tumor in small intestine?

Yes. I had a Dotatate scan and the cancer has spread to my liver and 20 places on my bones. I had bland embolization last Friday. Will see the surgeon for removal of primary as soon as I heal.

I have an unknown primary mine has spread to my liver spine and ribs
I have had 2 bland embolizations
I am now on Everolimus get my first bloods today
I was just wondering how the doctors are planning on treating the bone metastasis
I wish you the best of luck on your journey
Happy and Healthy Holidays

Hi @jestjohn,
I have NET small intestine primary tumor near pyloric channel & duodenum that was diagnosed by endoscopic biopsy (second opinion) October2022. This determined I am Grade 1 (slower growth) but with liver involvement which reflects metastases: Stage 4. About a year ago I began Samotuline Depot 28day injections (aka:Lanreotide) as treatment to control symptoms and hopefully tumor spread, as well as enlargement. I was told that this injection will retard Seratonin from spreading tumors (and retard growth) wherever they are.
I am sharing this with you hoping info on my experience (seemingly similar diagnosis) will ease your anxiety. After 6 mo MRI showed tumor shrinkage. I will have another MRI soon.
I am available to share more or answer your questions if you desire- you can reply here or by private message. Best to you.

@jestjohn: Best of luck with your scans today. You may be asked to have specific blood and 24hr urine tests… these will give you and your docs needed information to determine treatment. I would get copies of all test reports, including a DISC of today’s scans (request from tech today)!

@jestjohn, checking in. Like @dbamos1945, I wanted to ask how the scan went yesterday. Thinking of you.

Welcome, @teresea. You may be interested interested in this related discussion:
- Bland embolization or transarterial chemoembolization (TACE)
https://connect.mayoclinic.org/discussion/blan-liver-embolization/
How did the bland hepatic artery embolization go?

Hello, i was recently diagnosed with small intestine NET and spread to three lymph nodes. The mass and two lymph nodes were removed. I am told the third nodule could not be removed because its located at the base of the mesentery. I was reading that small intestine nets are known for depositing tumors into the mesenteric area, and known as mesenteric tumor deposit (MTD). Is anyone familiar with how MTDs are treated?

Hello @rogerstc and welcome to the NETs support group on Mayo Connect. I am glad that you found this forum. NETs are a rare form of cancer and it's so very helpful to find others who are walking this journey. I originally came to Mayo Connect when I was facing my third surgery for NETs in the duodenal bulb.

On Connect, we do have other members of this support group who have discussed mesenteric tumors. I would encourage you to read their posts so that you can learn more about their experiences and ask questions. Here are the links to those discussion groups:

--Newly Diagnosed and Scheduled for Small Intestine Resection
https://connect.mayoclinic.org/discussion/newly-diagnosed-and-scheduled-for-small-intestine-resection-what-to/
--New to NETs
https://connect.mayoclinic.org/discussion/new-to-nets/
Probably one of the most important things you can do is to consult with a NET specialist as they are specially trained and experienced in treating these rare cancers. Consider having at least one consultation with a NET specialist either in-person or virtually. Mayo Clinic has NET specialists at each of their three locations. Here is a link with information about obtaining a consultation at Mayo, http://mayocl.in/1mtmR63. If for any reason, an appointment at Mayo is not possible, here is a list of NET specialists worldwide https://www.carcinoid.org/for-patients/treatment/find-a-doctor/

For many of us who have NETs, we did not have any symptoms, the tumors were found incidentally and often when a scan or other test was being performed for another reason. Were you having symptoms that led to this diagnosis? From your post, it appears that you have had surgery. Are any other treatments being considered?

Hi @Hope33250, a trip to ER complaining of bloating and abdominal pain, and a CT scan found I had colitis, and two masses on my abdomen. A followup PET/SCAN confirmed the findings. There were 2 round solid-appearing mass lesions identified in the anterior lower abdominal mesenteric fat. The smaller one measures 1.4 cm x 1.3 cm. The larger more inferior lesion measured 2.3 cm x 2.1 cm. Additionally, there was nodule/lymph node measuring 7 x 6 mm in size. This past January, I had a laparoscopic surgery to remove the mask from the small bowel. They also removed some surrounding lymph nodes. However, they were unable to excise the node measuring 2.3 because it was too risky. The pathology report rated the tumor as a Grade 2. However, my oncologist never indicated the stage. The tumor seem to only metastasis to three lymph nodes, two of which were removed. The other node they characterized as a mesenteric deposit tumor. The miraculous thing about this node is it shrink more than half (from 2.23 mm to 10 mm) since my initial PET/SCAN in December, and I have not started therapy. They are starting me on lanerotide next week to control the growth. My most recent PET SCan only shows the tumor in the area where the node is shrinking. No other indication of NET throughout the body.

That is wonderful that the node is shrinking, @rogerstc. I am sure you are very pleased with that news. I'm wondering if you have had a 68 Gallium PET scan. This is a specialized scan that can detect NETs in other parts of the body. Here is a link with information about this scan,
https://connect.mayoclinic.org/discussion/68ga-dotatate-positron-emission-tomography-pet-now-at-mayo-clinic/. This scan is usually found in more sophisticated health care institutions such as research-oriented facilities like Mayo Clinic or a university medical center.
As you are going to be starting Lanreotide treatments here are some discussion groups that might be of interest to you,
--Lanreotide Injection
https://connect.mayoclinic.org/discussion/lanreotide-injection/
--Updating About My Lanreotide Injections
https://connect.mayoclinic.org/discussion/updating-my-lanreotide-injections-ct-scan/
Feel free to post in these group with any questions you may have as begin this new treatment.