← Return to Several inoperable paragangliomas, on lanreotide, now big mass

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@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.

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@floridanana
It sounds like you have had excellent care! I'm looking forward to hearing about your appointment at Mayo Clinic. Mayo is a great place to review complex medical issues like yours.

@floridanana I applaud your knowledge of your health. You have a 25 year cancer education and it shows that you've been paying attention! More than once you've had me researching your condition and medical terminology. I'm a student of this cancer and you've certainly taught me some things in this thread. I also must mention that as a fellow patient, I enjoy your colorful use of adjectives such and "huge" and "explosion" when describing your mass. I hope you talk like that to your medical team! Would love to be there if you. 🙂 I hope you continue to post and keep us in the loop with your journey.