I recently had surgery to remove NET in small intestine

My version of my NET journey: I am sorry to say that having diagnosis of Neuroendocrine Tumor cancer is likely to lead to frequent scans long term. Our type of cancer can appear and progress throughout our body, so the best thing to do is keep vigilant and report any unusual symptoms to oncologist.
Now for the good news: our type of cancer tends to grow very slowly! We also have many avenues of treatment available to us if tumor progression is found that can stabilize, shrink or eliminate cancer cells.
Bad news: no cure!
Be hopeful and lead a happy life. 🙂

Get a second opinion if that’s possible. Look for someone who specializes in NETS. I am currently seeing Dr Wolin offered what others were unsure of, so experience is important in my opinion.

I'm in the same boat. Well differentiated, had small bowel resection, still have a mass and cancerous lymph nodes. Having a PET scan every six months. Your surgeons thoughts/comments are typical for a person with cancerous lymph nodes. My surgeon said "there is no cure for it". The good news is you have a condition that it is possible to live a long time with. Lanreotide or Octreotide are two drugs that are reported to take away the building blocks that Neuroendocrine cancer needs to grow. Maybe discuss these with your docs.

My doctor is saying the same thing. Thank you for posting. It was very helpful!

Thanks for sharing, my experience was very similar (see below) additionally they removed the right side of my large intestine. This was in March of 2022. I have had scans completed as prescribed. In September 2024 my scans revealed a small tumor on my liver, the subsequent liver biopsy revealed a malignant neoplasm, morphologically consistent with metastasis from the known well-differentiated neuroendocrine tumor. After medical consult with my Oncologist & Surgeon we determined the best procedure would be microwave ablation and was completed in January 2025. Today I have my follow-up PET scan.
This was originally found as a result of a positive Cologuard test was resulted in a colonoscopy from a very thorough MD and she found the tumor in my small intestine. At no time have I had any symptoms.
Keep the faith...
COLON, TERMINAL ILEUM, APPENDIX, RIGHT HEMICOLECTOMY:
- WELL DIFFERENTIATED NEUROENDOCRINE TUMOR
- TUMOR SIZE: 2.8 CM IN GREATEST DIMENSION
- PERINEURAL INVASION PRESENT
- LYMPHOVASCULAR INVASION PRESENT
- ELEVEN OF TWENTY NINE LYMPH NODES POSITIVE FOR
NEUROENDOCRINE TUMOR (11/29)
- MARGINS UNINVOLVED
- TUMOR STAGE: pT2N2 (SEE SYNOPTIC REPORT)
- UNREMARKABLE APPENDIX
FINAL PATHOLOGIC DIAGNOSIS
SMALL INTESTINE, TERMINAL ILEUM, BIOPSY:
-NEUROENDOCRINE TUMOR
The ki-67 index is estimated to be about 4%,
consistent with intermediate grade/G2 neuroendocrine tumor

Thanks for sharing your story. My doctor told me good chance my next one would probably be on my liver. Praying for good results on PetCt!

My journey is similar except my lymph glands were all negative. I had a small bowel resection 6 weeks ago. Cologard detected the small tumor. My follow-up pet scan is in July. The oncologist suggested another colonoscopy in a year instead of three years

I will be having a ct scan and labs done in the next 3-6 months.

I have CT scans (with contrast dye) every 2 1/2 months. Bloodwork is done twice a month. I have an Oncologist with a team. This may be important.

I hope you are doing well and have no recurrence of NETs!

Do you mind sharing why your doctor stated that your next NET would possibly be on your liver? Also have you ever been on PPIs for stomach issues. Some think there is a possible link.

I had a NET removed from my duodenum bulb in October and the surgeon/oncologist that I saw for a second opinion told me that if I have recurrence it would be in the same area or liver. She didn’t give a reason for that, but said that I would just have to wait and see. Great feeling, but I’m doing my best to stay positive and trust in my God.

I will add you to my prays.