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,

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.

Do you have an oncologist referral?

Yes Oncologist on 4/21

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.

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

@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?

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