Hello,
Thanks for reaching out. Truthfully? I am lost. I think I am okay, other than that after a final annual follow-up cystoscopy and CT in December I will no longer be monitored. I have had a couple of scans since posting for this and other reasons (also have hemochromatosis), such as an adrenal "adenoma" and liver "hemangioma," which has been followed since 2013. I am concerned that "lymph nodes" (mediastinal, aortopulmonary window, etc.) have been seen on these scans, including the PET I had a couple years ago. They are called things like "nonspecific," etc. I was told by JH bladder doc that my tumor was benign and shouldn't come back. The "plan" was for annual CTs/cystoscopies through end of this year... then, NOTHING.

I need to know how to have this monitored here at home (Gloucester, VA), as I do not have anyone to assist me or to go to these "far-away places" that it seems we all must go. I do have face flushing, occasional palpitations, often look pale and deal with extreme blood sugar drops (to 55 within minutes of "feeling" it come on). I eat sugar and it goes away within 15-20 minutes. There is no rhyme or reason to those, with regard to eating (except when I eat something like a donut in the morning and then end up tanking). I am known as "nervous Nellie" because of my anxiety and have been convinced that it's a psych issue. I have a basic distrust of all things medical, resulting from my misdiagnosis/treatments that ensued unnecessarily. Even my hemochromatosis oncologist has no clue what paraganglioma/pheochromocytoma are. It is more perplexing, although much appreciated, that I have the worst gene combo for the hemochromatosis (two C282Ys) and haven't had to have phlebotomy since the induction phase in 2013. I eat what I want and take a calcium tablet with high-iron/all full meals, as it prevents the absorption of iron- grateful beyond measure, but concerned. All of this is very upsetting and too big to deal with on my own, so I just go on. I have chosen to be alone, so I am not seeking pity at all; it is what it is.

Does anyone know what protocol should be followed and for how long or how I could be monitored from here?

Again, thanks for reaching out. I think I "disappeared" because it was much easier to just block it out. I hope and pray for the health, happiness and well-being of all,

Susan