@djchambers: I am sorry you are faced with this situation with NET cancer. Most of your questions can be discussed on the Neuroendocrine Mayo Site… info from patients like me with small intestine primary (many of us with metastases to other organs.., also Lacnets now has gone international with their helpful organization!). I urge you to carve out some quiet time to absorb this background info. Verify info. This rare cancer affects each of us differently - treatment resolution, tumor growth, and therefore our prognosis. We help eachother through decisions for our best results. Be proactive!
I hope you have a NET expert Oncologist in charge of your case. If not please know it is rare that a regular Medical Oncologist will be able to advise you of the best treatments available (including Clinical Trials) - they are most familiar with “other cancers”!
When I had tumor progression I chose Lutathera PRRT at City of Hope and had great results with only fatigue as side effect. There are many options. Surgery may be the best choice, but the surgeon MUST be proficient in NET cancer (our disease needs a patient NET surgeon dedicated to leave behind the most healthy tissue possible and ONLY remove disease!).
Your general health, desire for minimal recovery, excellence of NET Oncologist/Surgeon/Radiologist are some of your primary objectives. If I were you I would learn/research about my disease and treatments & then ask for 2nd/3rd clinical consultation at a major cancer center (University hospitals may have Neuroendocrine depts, Mayo Clinic, City of Hope will assist you with this disease treatment.
I am 80, have Original Medicare with United Healthcare Group Supplement insurance and have not seen a bill. I see that Medicare has paid promptly everything & the 20% UHC paid all remainder $. You want and need the best insurance you can get- I know the premiums are more than the touted Medicare Advantage, but you need immediate referrals, treatments, access to the best medical care NOW! That is my story. Dorothy you can do this! Hug,Bette
Best health for us! dbamos1945