Finding a Doctor with Expertise in ACC

Posted by heart4wi @heart4wi, 16 hours ago

I had ACC with the NOTCH1 mutation in my distal trachea. It was diagnosed in 2024. I had surgery with a thoracic surgeon in May of 2024, followed by proton radiation.
My Medical Oncologist left Mayo, and this resulted in my Tempus report showing relevant mutations that impact the surveillance I need being buried in my chart, with no one aware of its existence. I found it and brought it up to my Radiation Oncologist in late 2025. Unfortunately. I now lack anyone on my team with expertise in the type of ACC I have. I have been researching with the help of the NIH and ACCRF websites, which have been immensely helpful. I really feel that I need an Oncologist with expertise in ACC plus NOTCH1 to fill in the gaps. I am happy to report that I have remained NED thus far, though I do have some "features" 😀 that are being watched in my quarterly chest CT.
I have a consultation with a Head and Neck Oncologist with a high degree of knowledge coming up. For reasons I won't go into here, I want to transfer care coordination to an Oncologist (Radiation? Medical?) with expertise in this disease.
I do not know how to accomplish this. Can someone point me in the right direction?

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