Several inoperable paragangliomas, on lanreotide, now big mass

Welcome. Have you posted before? That's a lot to unpack. You have a rare type of Neuroendocrine cancer with the paragangliomas. The biopsy showed "sarcoid-like activity". Was that a biopsy of the mass in the mediastinum?
How are you feeling? How long have you been on Lanreotide? Do share if you are comfortable with it.

I have Nets of the Mesentery and have been on Lanreotide for 2.5 years. I believe it really helps me. Everybody has a different journey. I hope you find some answers at Mayo.

I hope for you it is just inflammation. If not, you’ll be in great hands at Mayo.

Hello @floridanana

I am glad to hear that you have an appointment at Mayo Clinic. This sounds complex and definitely needs the attention of NET specialists. Could you share what type of symptoms you were having that resulted in this diagnosis?

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.

Have you had genetic testing done? I so hope Mayo can help you, wishing you the best!

@floridanana

You've been on quite a journey. I hope you find answers at Mayo Clinic. Will you post updates and let me know how you are doing?

@fraaseo Yes, in 2004 I had genetic testing by Kenneth Offit, MD, the chief of Genetics at MSKCC and I was positive for the SDHD mutation. Luckily I only passed the gene to one of my children who is multiply handicapped and resides in a group home and will never have children herself so I never have to worry about passing on the active disease. This daughter is still checked yearly with bloods and 24 hr urines.

@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.

@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.

Glad to hear that you are going to Mayo. My husband has NETS throughout his skull and body. He had 1 tumor removed in 1995. He was rediagnosed in 2022 - Stage 4. He is on Lanriotide and his scans 6 month ago showed everything stable. We have an appointment on Monday, Oct. 6 and praying that all is stable. He has had excellent care at Mayo. His dr explains everything very well in terms that we can understand. Good luck!!