Anyone have a neuroendocrine tumor (NET) in the spine?

Absolutely. I will utilize the links provided and make contact with Dr. Liu should alternatives closer not offer the virtual appointments. I realized I missed your earlier question. He has thus far completed multiple CT scans and a FDG PET but doesn’t appear to have had or yet been referred for the 68GA Dotatate Scan. This forum has prompted so many additional insights and questions! I’ll be noting these to present them at our next follow up and/or any additional consultations. Thank you so much for your time and feedback. We will post more as we learn more.

I look forward to hearing from you again, @tatnick02. I am glad that you have learned so much from this forum. Keep asking questions and learning about NETs. The more you understand about this rare form of cancer, the better you and your fiancee can advocate for the best care and treatment possible.

Primary NET in duodenum with Mets to liver and spine. No pain in my back, T-11 is what lights up in PET Scan. I was initially frustrated on no treatment or monitoring of spine until I learned that NET of bone doesn’t usually cause any problems of fractures, etc. NET of liver is what will kill you so treatment is aimed at that. One oncologist didn’t think I should golf and gave me infusions monthly to strengthen bone, but other oncologist thought that was too much. I played golf weekly this summer and got a Hole in One!

@vanhauen, Hello Nancy, and welcome to the NETs support group on Mayo Connect. I appreciate you sharing your journey with NETs here on Connect. Each person's NET experience is different, so it helps when we share our story. Coincidentally, I have had three surgeries for a NET in the duodenum bulb. So far, no evidence of metastasis, but I know my story is unique.

By the way, congratulations on your hole-in-one!

As I looked at your profile, I saw that you were diagnosed a year ago. It sounds like you have learned a lot about bone NETs. It is good to know that NETs of the bone do not usually cause fractures. That is an encouraging fact.

Since many of us, myself included, with a NET diagnosis never had any symptoms, I'm wondering how your NET diagnosis came about. Were you having specific symptoms that led to scans or other tests?

If you are comfortable sharing more, what type of treatments have you had for the liver NET?

I had an identified tumor on one of the tabs on my spine (T3 maybe?) -- after some discussions Colin Hill at NYU Langone decided to give me 3 low doses of radiation rather than one more concentrated dose over time (I think it was 3 weeks). This was over a year ago now and seems to have worked out extremely well -- I did not have any side affects (very slight soreness which some aloe cream they gave me solved) and (so far!) no there has been no recurrence

Prior to radiation, did you experience a lot of pain or mild discomfort?

Looking back, I had symptoms of severe diarrhea 5 years before diagnosis. Nightime diarrhea including incontinence. Went to GI digestive clinic. Blood tests negative for Celiac, colitis etc. but did have SIBO small intestine bacterial overgrowth. They treated me for that but never did an endoscopy. They told me I had Irritable bowel disease. My symptoms did lessen when I restarted my Omeprazole ( proto pump inhibitor). An ulcer was found in my small intestine (duodenum) during an endoscopy for unrelated reason. I wanted my esophagus checked before I continued on a medication for Osteopenia. Biopsy of ulcer was grade 3 neuroendocrine tumor. I was starting to have pain in my right side, just below rib cage. Right before the endoscopy I had CT scans and a HIDA scan of gallbladder. All negative. (My cancer does not show on CT Scan). MRI and dototate PET scan show Stage 4 metastasis to T-11 spine and small 1 cm or less lesions in my liver too many to count. Oncologist at MHealth Fairview started me on CAPTEM oral chemotherapy. And monthly Octrotide. Some shrinkage in liver after 3 months. Continued for total of 7 rounds when cancer remained the same. After 4 months of no chemo and just injections cancer has remained stable. Consult at Mayo In Rochester determined I have gastrinoma. Thus I need to be on proton pump inhibitor. Mayo would have suggested just injections and not the oral Chemo to start with. My cancer is well differentiated and so far hasn’t been as aggressive as a Grade 3 can be. I have my MRI’s at Mayo and am followed there and M Health Fairview. Hoping for continued stable cancer for as long as possible. Next treatment will probably be PRRT. I was told no surgery.

I appreciate learning more about your story. You mentioned that your NET did not show up on a CT scan, that is often the case. The Dototate PET Scan and MRI are more reliable tools for detecting NETs. Regular X-rays and CT scans often will not pick up a NET.

I'm sure that you are pleased that you have experienced some shrinkage in the liver tumors. How often will you follow up with an MRI?

I hope you are eating comfortably. Have you lost weight?

MRI about every 4 months, eating is going too well. Thus the increased severity of Fatty Liver disease and weight gain over 30 pounds!