Anyone have a neuroendocrine tumor in small intestine?

Yes Oncologist on 4/21

Do you have an oncologist referral?

I was diagnosed in January that I had a NET. I had CT Scan and PET Scan with gallium. 3 NETs showed up in Small Intestine. I was scheduled for a Right Hemicolectomy Laparoscopic procedure. Pathology Report came back today and indicated 8 of 24 Lymph Nodes had Tumors.
Not sure what to expect as far as ongoing treatment.

Hi hopeful33250 - yes, i had the 68 Gallium Pet Scan. BTW,

Hi jestjohn, I’d be interested to know the results of your Dec. 15, 2023 PET scan. I had the surgical removal of a malignant neuroendocrine tumor and several lymph nodes (one was malignant), in the small bowel in July 2022. I’m a relatively healthy 81 year old man.

To follow up, I had a PET scan with dotatate (Cu-64) a month later and the radiologist noted that it showed “multiple small to borderline Cu-64 Dotatate-avid mediastinal and hilar lymph nodes, suspicious for metastatic disease.” I had read and investigated the disease, including many responses on this site. A Chromogranin A blood test several days later was within standard range but my oncologist offered to begin Octreotide injections. It’s not easy to question your Dr. but I decided to wait and to get a second opinion. A team at Dana-Farber Cancer Institute in Boston examined the original biopsy, all tests including the PET and thankfully reached a different conclusion. They saw only slight “uptake” of the radioactive marker in those lymph nodes, not the significant uptake that is usually indicative of NET cancer. Combined with my lack of symptoms they noted that if a repeat PET scan in three months showed a similar result, I should have nothing to be concerned about. That repeat PET was similar and so the Drs. and I are very optimistic. I have subsequently had several follow up CT scans, several Chromogranin A blood tests within standard range and no symptoms. I feel fortunate and strongly recommend learning all you can about the disease and especially consider second opinions when facing important decisions.

Hi, I was diagnosed 8-7-23 with NET of the small intestines. I am a Grade 2 (Intermediate growth), Stage 3, because it has spread to several lymph nodes. I had a large (size of a line) tumor on the SI, one inside the SI, and a tumor in th lymph nodes surrounding. Also upon further evaluation I had it in 10 other lymph nodes as well. I began monthly Octreotide injections in November and just completed my 4th treatment. I also have two active tumors which were picked up on a PET scan in November. I am having another PET scan next month to see if the injections are helping. I continue to deal with diarrhea several times a day, fatigue, weakness, weight loss, etc. I have not had any ill side effects of the injections but we’re not sure that they are helping as they should either. My oncologist will determine the next step after the scan. I have a wonderful team of doctors, a fantastic therapist and nutritionist, and nurses to support me (along with my family and friends). I wish you all nothing but the best and hold you all close in my heart, as this has been an emotional journey for me. I think everyone is different in the kind of treatment that works best and the symptoms they are having from what I understand. If I could offer any advice it would be to research and get a good oncologist and to educate yourself as much as possible about NET cancer. Prayers for you!!!

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.

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.

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?

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?