That is a tough diagnosis for sure. But keep in mind that there's a wide variation in outcomes with these rare diseases . The doctors just don't know a lot because there haven't been widespread studies. A breast cancer survivor friend of mine recently had a brain mass discovered on a routine MRI. We spent two weeks thinking it was breast cancer metastasis (fatal at her age). Turns out it's a benign thing she's probably had for years! Hang in there, take things one day at a time, stay grateful, stay hopeful. Best wishes.

Jamie,
Glad you have a solid diagnosis. I am sorry to hear that it is cancer, but now you can move forward and make a care plan. Keep up
the self advocacy and any positivity you can muster. Sending positive thoughts your way.
Kristy from oregon. 💕