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Finding a Doctor with Expertise in ACC
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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@heart4wi, by ACC you are referring to adenoid cystic carcinoma, right? How did your consultation go?
@colleenyoung It is scheduled for 9/22.
@colleenyoung Thank you for responding. I still am unsure as to how I go about finding a new oncologist. And yes - adenoid cystic carcinoma with the NOTCH1 mutation. The consultation is actually on the 23rd, the day after my next scan and appointment with the current radiation oncologist or her PA.