Has anyone seen an NET Specialist at UAB’s NET Research Lab?
Bit of a background on me. I recently had a lung NET removed. It hadn’t spread to lymph nodes or anywhere else per the lymph nodes being removed after surgery and the dotatate scan a month before. It ended up being grade 2 / atypical (barely) with the highest ki67 being 5% and mitosis being up to 2. The pathologist and my oncologist both said the main reason it’s atypical instead of typical is that the mitosis goes up to 2 and not under 2, otherwise everything else looked good and typical.
The plan now is regular monitoring and scans with my general oncologist. She’s been fantastic so far and explaining things and has been very open and interested herself in further testing and second opinions. I had a Signatera test done recently that we’re waiting to come back, and she’s also referred me to genetic counseling just to explore and investigate more. This is with a great hospital system overall that’s been nothing but helpful and quick with everything. She’s also referred me to a lung cancer oncologist at the neighboring university research hospital for a second opinion which I’m excited about.
With all of that said, I’d still like to see an NET specialist, though there doesn’t seem to be any near me in St. Louis which is why my oncologist referred me to this lung cancer oncologist for the time being. Both oncologists seem great and seem to work with NETs a lot. My oncologist recommend Mayo if I want to see a NET specialist specifically, but travelling for that will be very inconvenient.
Does anyone know if you can do virtual appointments with Mayo’s NET department?
Does anyone have experience with UAB’s (Birmingham) NET clinic?
Does anyone know of or have experience with any others that can help done virtually?