@outlawcancer,

It sounds like you have been working on this diagnosis for a while, now. This is very typical of neuroendocrine tumors. Many members in this discussion group were misdiagnosed for a number of years before their NETs were finally diagnosed, it is unfortunate but just recently, NETs are being recognized and diagnosed earlier than they were previously.

Do you live near a renowned cancer center or a university medical center? If so, it would be in your best interest to consult there once you have your PET scan results. As NETs are a rare form of cancer, general oncologists often are not experts in the treatments for pNets.

It will also be to your advantage to learn as much as possible about NETs. I recommend the Carcinoid Cancer Foundation website as a good resource for more detailed information and perhaps as a way of finding a NETs specialist nearby. Here is the website, https://www.carcinoid.org/for-patients/. Look at the icon on the top of the website that says, "For Patients." When you click on that you will find a lot of information that will lead you in the right direction for treatment and provide you with good questions to ask when you meet with your doctor.

When is the PET scan scheduled?