I'm only a few months into this journey so I still don't know what most of the numbers mean. I read them in case I ever DO understand them, but I am working to get to a mental place where I know I can't change the results of a test, so there's no urgency to hear from the doctor immediately.

I've decided I'm never reading the PET scan (4 so far) results again since every single one makes me FREAK OUT and I can't sleep for the few days waiting for the doctor's response. Even my second and third ones that showed my treatment was working excellently beyond all expectations freaked me out because I simply didn't know what I was looking at. I learned my lesson at the last one, where I thought it was all good, and the doctors were like, well, these pictures indicate very miniscule disease progression so we're delaying your ASCT and starting chemo round 2. I was pretty depressed! And I realized I would be just as depressed had I waited and not read the thing.

I am a massive worrier, always have been, and I will still continue to worry about my family members, but I am hopeful that this small measure will help me a little bit with my own case. We'll see if my resolve not to read PET scans pans out!

Everyone's experience is so different but I really value your question and these replies - they make me feel less isolated in my own trauma and drama.