NET Specialist

@tgsenn70 We are here to share our journeys and learn from each other. I believe doctors are part of that journey. We all want the best care possible. Please ask.

My husband has been a patient of Rochester Mayo Dr. Thor Halfdanderson and his staff for the past 3 years. He also sees Dr. Sonbol at Scottsdale Mayo where we winter. We have been very impressed with both doctors and feel that he is getting the best possible care for his S4 NETS. He was recently in ICU for newly diagnosed AFib. While the local doctors have heard of NETS, they mainly know that it is a rare cancer. It is reassuring to know that we have 2 doctors who specialize in NETS.

We have been referred to Dr J Bart Rose at UAB in Birmingham, AL. He is a NET specialist. I just like to know as much as I can about a doctor before any surgery takes place.
Thanks for your reply, and I wish your husband and you the best on your journey.

I have definitely been blessed living in Saint Augustine Florida. Mayo Jacksonville is 20 minutes away, and I fully trust Dr. Starr and his team for my care with this.. I have often brought up to him and his team, treatments and comments from other people with the same diagnosis and I always walk away confident that my treatment plan is best for me..

I started seeing Dr. McGarrah at Mayo in Rochester in October. It is a 4 hour drive but so worth it to have the knowledge and technology to care for me. Although I am Dr. McGarrah's patient, there is a team of experts available for my situation.
Best wishes for you.

Dr Rose is listed as a net specialist on http://www.netrf.org. 20% of his patient base are net patients and he's published 3 net research papers.
It looks like Iike there is a net support group in the area also. Perhaps that would be a good resource to get more info on him.
https://netrf.org/specialist/the-gulf-coast-net-support-group/

@lindabees thank you!

@tgsenn70 It's a small world. I was referred to Dr Rose too back in '23. Due to my difficult Nets case, He then referred me to Dr. Beaudreaux in Metairie, La. at the Rare Cancer Center where I had a small bowel resection due to Nets. I currently visit UAB once a month for a Lanreotide injection. Good luck to you.

Hi@jlsgt! Yes it is. Would you mind sharing with me why Dr Rose referred you to another doctor? If you had rather communicate with me you can send me a private message. 😊

I can shoot you a private message. Pretty much nobody I talked to wanted to do it at the time.