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Paraganglioma / Carotid Body Tumor Question
Neuroendocrine Tumors (NETs) | Last Active: Jun 3, 2023 | Replies (107)Comment receiving replies
Hello @cootiesgirl1
It is good to hear from you. I appreciate the update. You have certainly experienced a number of problems and I hope that you are on the right track now. When you say you have no "following doctor" I'm assuming you mean and internist/PCP who oversees your general health and what all the specialists are doing. Can John Hopkins offer you any referrals to an internist who will follow up as your PCP?
It does sound as if a consult with a cardiologist would be a good idea. Has John Hopkins mentioned you seeing one of their cardiologists? Is the AP Window Defect a congenital problem (from birth)?
Please continue to post, @cootiesgirl1. We all learn from each other and it sounds as if you have had a lot of experiences to share. I wish you well as you seek the best medical care for your many health concerns.
Will you post again and provide an update?
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Thank you for your interest, @hopeful33250! When I say no following doctor- JH doc is a bladder ca doc, tumor was in bladder but NOT bladder cancer. My uro who was treating me for bladder ca is here. He knows nothing about any of this dx. JH doc said monitor yearly with PET/MRI and cystoscopy. Uro here carrying out orders. Other than that, I don't know who would respond to suspicion of a tumor. JH doc said I could return to their neuroendocrine team if needed. I am monitored at my local cancer center for hemochromatosis and they won't oversee it b/c they said it is too rare. Yes, I'm assuming the AP window defect is congenital. I have always had a murmur, but didn't know the cause. I can only assume this is it.
I was reading a post above and am a bit concerned b/c I have been having sweats, flushing, higher blood pressures and headaches, which I usually do not have. What could be done at the local level to begin? (Metanephrines, 24-hour urines?) I came off prednisone for cellulitis of face about 9 days ago. Seems to have started during that. I have also pretty much cut out sugar after having been a sugar addict. I am so confused as to what may be what. Thoughts?
Peace, Joy and Good Health to All,
Susan