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Anyone have a neuroendocrine tumor in small intestine?
Neuroendocrine Tumors (NETs) | Last Active: Feb 15 6:24am | Replies (13)Comment receiving replies
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?
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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.