The beginning of my story starts here
Today I met with my new endocrine doctor at Banner for the first time. She covered many things I had learned from my sisters, my genetic counselor, and the Pheo Para Alliance. We talked about some of the medications and supplements my natural path has me on. She also mentioned tumors in the heart.
What? Have I heard this before? I am surprised almost every time I talk to someone new. I had no idea. It reminds me even with research and joining Pheo Para groups, conversations about it, we still have much to learn. Words that stood out today are not new, but I don’t remember them jumping out and saying pay attention to me. Different words probably stood out to my sisters during their appointments or conversations. I am already so glad we have started this site. This website has already helped me realize that conversations we may or may not have had before were significant. Because life is busy. We forget who we shared with or we might miss something. Especially in our case where it affects 5 out of 6 family members. It can be very hard to keep track.
I have gotten off track, so back to my appointment. The doctor laid out my next steps, and I will have a blood test plus 4 MRIs. They will look for GIST, gastrointestinal stromal tumors, or new tumors in my chest, abdomen, and pelvis. The MRIs are going to be done with contrast and at the recommendation of my insurance, I will be going to an off-site location. The off-site location has me scheduled for 2 appointments to do 2 MRIs at a time. I will also meet with my natural path doctor, who I consider my primary care. We will work on ways to improve both my general health and she said she would look into the medications and supplements I am using and the effect they have on paragangliomas.