Zebra Blog - What’s the importance of finding the primary?
Neuroendocrine tumors are a complicated malignancy because they can come from all over the body. Therefore, they require specialists who understand the different types to determine the best treatment strategy. In general, most NETs come from the respiratory and digestive tracts. We advocate finding the primary tumor because it gives us information on the behavior of the tumor, but also what treatments it might respond to.
Take for example a tumor from the small intestine. It is difficult to find because we don’t have good conventional scans for it. However, that small tumor can lead to bleeding and blockage, so we encourage people to have it removed before it causes problems (surgery). However, if the tumor comes from the pancreas and metastasized, then we may choose medical treatments first (chemo/molecular medicines) before doing surgery.
The types of hormones that the tumor produces may also be related to the primary source. Tumors from the small intestines tend to make serotonin, while the ones from the pancreas may make many different types of hormones. Ones from the lungs may produce very unusual hormones.
Unfortunately, sometimes we can not find the primary. We then have to use our experience and information from the initial evaluation to determine the best course of action. As always, I encourage NET patients to see NET specialists - now you can see why.