Anyone have a neuroendocrine tumor in small intestine?

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!!!

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