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Neuroendocrine Tumors (NETs) | Last Active: Apr 17 5:51pm | Replies (384)
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@ogcen

Hello everyone. I have bilateral Pheochromocytoma's on both my adrenal glands. I live in Oregon. This has been a 3 year ordeal that recently got me a diagnosis about 4 months ago. I'm currently phenoybenzamine currently and am feeling about 60% better but it's a daily struggle. I'm feeling pretty low and I'm pretty sure this is not the worst. I am wondering if I need to be at a tertiary center with bilateral lesions. My doctor has mentioned it but has not pushed it. Anyone here with bilateral Pheos?

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Replies to "Hello everyone. I have bilateral Pheochromocytoma's on both my adrenal glands. I live in Oregon. This..."
Teresa, Volunteer Mentor | @hopeful33250 | Oct 23, 2022

Hello @ogcen and welcome to Mayo Connect. I can certainly understand your wish to be at a cancer center that excels in treating this rare disorder. Since your doctor has suggested it have you considered asking for a referral? For any rare diagnosis, it is always wise to be seen in a medical facility where they specialize in treating that disorder.

For your information, here is a link to an article about this from Mayo Clinic's website:
--Pheochromocytoma
https://www.mayoclinic.org/diseases-conditions/pheochromocytoma/symptoms-causes/syc-20355367

You say that you are feeling 60% better with your current treatment. What symptoms are the most difficult for you right now?

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sfischbeck | @sfischbeck | Nov 8, 2022

Are you planning to have them removed?

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