This is a really nice, helpful response.
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Here is a great resource to find NET specialists – http://www.carcinoid.org/for-patients/treatment/find-a-doctor. I'm glad the document was helpful for you. If you don't mind, if you have any suggestions what you feel should be added, please let me know. Always trying to make enhancements.
This is a challenging subject. My wife like you has her specialist Oncologist at Mayo and a local oncologist where we live. We consider Mayo to be the lead for disease strategy and our local oncologist, one who executes the strategy on a daily/monthly basis labs, Octreotide, Afinitor prescriptions), etc.
Luckily, they work well together. Our local providers practice is a Mayo Network Partner so that may make a difference. We also haven’t run into any ‘controversial’ issues like yours.
In your case, I may ask to arrange a three way conference call with them with you acting as the moderator asking them to develop a strategy that will work in your best interest. A live phone call with all on the line may make a difference. Too many people hide behind emails and messaging.
Just my two cents.
Wisconsin has its own patient directed group for those with NETs and their caregivers. Its called Wisconsin Neuroendocrine Cancer Connection. The group is on facebook. This year are planning three gatherings – one in Appleton, another near Milwaukee and one in Madison. The benefits are being able to share experiences, get questions answered, deal with insurance issues, gain emotional support and meet new friends. Also this year, we've joined NCAN – Neuroendocrine Cancer Awareness Network – the largest patient focused NETs group in the world. This will provide us access to more resources. Please share the attached flyer with your local oncologist and other medical professionals who may treat those with NETs.
Tue, Mar 19 9:08pm · Anyone treated for NETs at Mayo Clinic in Jacksonville, FL in Neuroendocrine Tumors (NETs)
Neuroendocrine tumor – the cancer that Steve Jobs and Aretha Franklin died from.
Here is a link you should find useful. Most either will take you the building you need to go to or there are busses. https://www.tripadvisor.com/SmartDeals-g43466-Rochester_Minnesota-Hotel-Deals.html