Frustrated
12 weeks post adrenalectomy where a 5.7cm ganglioneuroma was removed, and just met with my endocrinologist and am flabbergasted.
Quick recap: tumor discovered in 2002, and quiescent until 2024/2025. Symptoms included: rapid weight gain, facial swelling, facial hair, leg cramps, facial flushing, skyrocketing blood pressure. Imaging was stable (at 3.9 cm), and labs were mostly normal with a few errant results. My endo referred me to MGH Cancer Center Adrenaladenoma Center, as I was demonstrating symptoms but labs did not support diagnosis.
In October, I met with the MGH endocrinologist and he ordered additional tests and thought hormonal birth control could cause the mismatch in clinical presentation versus labs. Said my symptoms were there but not as bad as full-blown Cushings. Temporarily diagnosed with subclinical Cushings, and that adrenalectomy seemed reasonable. Follow up in December and endo changes course and says I’m not a candidate for surgery but should spend 2026 completing additional testing. I was not happy with that, and advocated for surgical consult. Endo was not on board with surgery and said I would regret it. Surgeon immediately recommends surgery, as the symptoms have no other logical explanation.
Surgery in February 2026 goes a bit sideways but they remove the tumor. Surgeon says tumor is covered in bright gold, indicative of Cushings. Immediately symptoms improve - leg cramps go away, face thins out, flushing goes away. Granted, I’m dealing with surgical side effects from complications.
Today I had my MGH endo follow up. Doctor says assuredly that not one of my symptoms had anything to do with the tumor, that all of the symptoms were mere coincidental and that any symptoms I’m still experiencing should be “investigated elsewhere.”
I’m just terribly upset about all of this. It’s like this doctor is butt-hurt that I went with the surgery.
Thanks for letting me vent.