@nannybb
I’ve read all of your responses, but I did not see a previous one regarding OHSU or the local support group but I see you already have an appt with local NETs specialist so that’s great.

As for any medical knowledge I may have, I’ve always researched my medical conditions since I first had access to medical books in college. I always had a wide array of medical issues including many rare ones. I feel being informed is the only way to be an advocate for yourself, ask good questions and know when a doctor is missing the mark. I also know doctors have limited time to spend on each patient and often don’t know much about rare stuff. No one is willing to spend more time on my case than I am. My primary doctor once told me, “I learn something new every time I talk to you.” I also research for friends and relatives especially those confused my medical stuff.

When I was diagnosed with lung NETs, I couldn’t figure out why 20 doctors in several specialties over 12 years were baffled by my 50+ lung nodules and guessed incorrectly. And why did most lung NETs patients only have only one tumor? I kept researching and told my local breast oncologist I finally figured out what else I have — DIPNECH. I handed him a retroactive study Mayo did on 59 DIPNECH patients. There are only 300 documented cases. Super rare but likely underdiagnosed. He had never heard of it but thought I was onto something. Of course the lung NETs team at the university hospital an hour away was familiar and made the official diagnosis along with lung NETs. They coordinate with my local oncologist for the octreotide shots. Researching DIPNECH is actually how I stumbled upon MayoConnect.

I recently asked an electrophysiologist a specific outcome question about my likely cardiac ablation coming and he responded, “I don’t know because no one has ever done a study on YOU.” I thought to myself, “I have.” 😊