@rose2525: I feel your frustration! NETS primary tumors tend to be illusive and difficult to discover. In my case the primary suspicious tumor was playing “peek-a-boo” with my Gastro doc during an exploratory endoscopy to reveal a cause of my symptoms (At the jeouno-duodenum small intestine). In reflection the Gastro doc asked me if I would agree to a repeat endoscopy to “take another look at this area” - he was able to get a biopsy of this suspicious illusive area; therefore Pathologist diagnosed Carcinoid Cancer & further verified by 2nd Pathology opinion! Unfortunately, upon further investigation metastases found in the liver.
Question: Can you get a Gallium 68 PET Scan? It should reveal any Samanostatin-receptive areas of NET tumors; perhaps this will lead to a verified NET biopsy (or maybe even a surgical removal). It is good that your Oncologist has prescribed the 28 day shots that can reduce symptoms and might control tumors. You have the required lab test results… just need a biopsy to reveal the Grade, Stage & Stain Results plus perhaps further specific scans that will help determine best treatment!
Have you consulted with a Neuroendocrine Medical Oncologist? They will provide your best advice on treatments and guidance determining your decisions with the help of a Tumor Board recommendations. They can be found researching “Cancer Hospitals/University Medical Centers”. We are so fortunate when we find a NET specialist (Oncologist, Surgeon, Radiologist, Nuclear Medical Professionals). NET cancer is a rare speciality, but NET cancer is different than other cancers and each NET patient reacts differently. We need a specialist!
I believe this is NET patients most important decision! No matter that we have to travel to get the care we NEED! Best of health to you. Bette