Hi. Does anyone have NET in neck on spjne at C7 T3?

Posted by lamz @lamz, Jun 1 3:01am

After having an NET removed on my appendix, I had a right hemicolectomy to test for more tumors, but came out clear. Thereafter had a Pet scan l, which shows 2 NET on spine. I was diagnosed and given the option of sandostatin treatment or surveillance. How do I get a correct diagnoses? Why was my colon cut to check for NET's? Could they not do a pet scan to check colon too. I was, after pet scan diagnosed with NET on the spine and told that type of cancer cant be seen on MRI. Why then after 6 months do an MRI and say it is hemangioma? I had previous MRI which shows widespread multiple hemangiomas on back, but why does only the two highlight on Pet Scan? Tge conclusion is now that the 2 tumors are hemangioma and it is freaking me out. Not that I want cancer, but what If I am misdiagnosed and treatment is delayed?

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

fraaseo | @fraaseo | Jun 1 11:48am

Are you seeing a NET specialist? The most common place for Primary NETS is small bowel (colon). They were probably running the bowel searching for any tumors or metastases. NETS doesn’t always show up on PET scans, MRI’s seem to pick them up better especially if they are small. A biopsy would be able to rule out hemangioma vs NETS.

Turkey, Volunteer Mentor | @tomrennie | Jun 2 12:43pm

@lamz Hi and welcome to Mayo Connect. I have to admit that I am confused as well. I don't understand why a hemicolectomy was used to check for NETs, when they can appear anywhere in the body. For example, I have stage 4 pancreatic NET that has spread to my liver and bones including my spine. I get a GA-68 dotatate PET scan to see my cancer. The GA-68 dotatate contrast is typically very successful for most people to evaluate their NETs. The contrast used during the scan is very important. They don't all show the same things. But sometimes the contrast doesn't work for some people. Like @fraaseo said, MRI's can be a better option. Regardless, seeing a NET specialist and having a biopsy would show if you have hemangiomas or NETs. Are you seeing a NET specialist? What is the game plan moving forward?

Teresa, Volunteer Mentor | @hopeful33250 | Jun 2 1:22pm

Hello @lamz,

I see you have been offered some good suggestions from @tomrennie and @fraaseo. As they both suggested, I think that some of the confusion might be cleared up by seeing a NET specialist. There are NET specialists at all three Mayo Clinic locations (appointment information is available at http://mayocl.in/1mtmR63).

If it is not possible to be seen at a Mayo facility, here is a link from the Neuroendocrine Tumor Research Foundation with NET specialists in the U.S.: https://netrf.org/for-patients/neuroendocrine-tumor-doctor-database/page/8/. It would probably be in your best interest to get at least one consultation with a NET specialist.

Would you be interested in seeking a second opinion from a NET specialist at this time?