Hi Mike @mikecincy

Sorry to hear you've joined the NETs club. It looks like you're doing your due diligence! Great!

LACNETS.org is another great NETs organization that provides lots of posted presentations from NETs specialists and other resources.

Teresa already provided lots of good questions. In addition to how long the specialist has worked with NETs, ask what percentage of their patients are NETs and more specifically how many colon NETs patients they've had. My team handles NETs but more non-NETs.

Since OSU is not close to you, you might ask if you can have virtual visits in the future when no physical treatment is required. I do that with my UCLA team. So convenient. I also have my octreotide shots through my breast cancer oncology office a mile from me even though the ULCA lung NETs team is ordering them. They coordinate with my local breast cancer team for my convenience.

What are the goals and side effects (short-term, long-term) of each treatment? Does it stop tumor growth, reduce symptoms, etc.

They may ask about carcinoid syndrome symptoms. Research the symptoms so you can think about which ones, if any, you've had, the severity and for how long. That may affect the treatment plan.

How will they monitor your NETs? Scans? Labs? How often? Where? My UCLA team only wants me having scans at a UCLA facility because they believe they know what to look for more than my local facilities. It's best to be consistent about where you have the scans so they can compare results to past scans.

I hope you hear a lot of positive news at your consultation. I have lung NETs/DIPNECH and the 50+ tumors are very slow growing (Ki-67 2%). The octreotide injections have really helped my respiratory symptoms. I don't know the specifics of colon NETs, but as you've probably heard everyone say, NETs is a marathon, not a sprint. It's treatable. That suggests we'll be around for a long time. Blessings, Zebra