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

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