Several inoperable paragangliomas, on lanreotide, now big mass

@hopeful33250 I’ve been serially scanned since my first tumor which was very large in 2001 and knocked out several cranial nerves. Had my first surgery with Dr. William Lawson (recently passed away) at Mt Sinai Medical Center in Manhattan, NY, wonderful man. Left glomus vagale. Was afraid to operated on second tumor in right carotid body. Switched my care to Dr. Jay Boyle at MSKCC also in Manhattan, NY, unfortuanately had a CVA post surgery and spent 2 weeks in telemetry until and 6 months on BP meds until my blood pressures equalized. The carotid bodies control blood pressures and the jostling of the area was enough to put me into baroreflex failure. Had many airway surgeries to help my swallowing deficits since then by Dr. Peak Woo, past head of Grabscheid Voice Center of Mt Sinai Medical Center, now in private practice on Upper West Side of Manhattan. The man is a genius. Last surgery was suppraglottoplasty during covid, as I still pool my secretions. Then over the next few years multiple tumors began growing again in my skill base and my mediastinum, told me all inoperable.

I’ve been dealing with PGL1 for over 25 years - had multiple surgeries and had been followed by hospitals in NY. Fast forward to right before covid and we relocated to South Florida. Tumors started growing again, hooked up with U of Miami Health Center, great academic center, great providers, these tumors are inoperable, had radiation, on lanreotide injections one a month, had explosion in size of mediastinal mass within last month. Biopsy inconclusive in that my mass is unreachable, nodes next to lungs showed sarcoid-like granulomas yet no evidence of sarcoidosis in other testing modalities. Beyond what U of Miami is able to figure out/has experience so wrote referral to Mayo as I’m symptomatic. Mass is leaning on my trachea and vessels and impinging already reconstructed airway from glomus vagale surgery and subsequent cranial nerve damage in 2001.