My my mind is all over the place. I don’t quite know what to do.
Crap. CRAP. I just got off the phone with a representative from UCLA Neurosurgery. It looks like I have my third recurrence. I don’t understand how University of Washington could have reviewed my most recent scan to past scans and felt there was no recurrence, yet UCLA is confident the tumor has grown.
I need more information. I’ve asked for copies of the notes from the UCLA tumor board, and their radiology review. I’ve asked for a callback from one of the doctors or physician’s assistants, since Dr Liau is too busy to handle me personally anymore. I worry that this is going to turn into a thing. A frustrating thing where I will need more of their scientific reasoning, and proof that the tumor has grown. That I will need to see measurements, and assessments. What about a DOPA-PET scan. Remember that scan that I took in LA back in October of 2013? It’s a special scan for low grade gliomas that will differentiate between tumor and scar tissue, clarifying the MRI images. Why didn’t they ask for that? Do they think that my tumor has advanced in stage? (Uh-oh.)
I’m not surprised that the tumor has grown, it’s what they do. But I’m not going to start a treatment program based on an office worker’s forwarded information. I want to talk to the doctors, and the decision makers. I want to talk to people that can answer all of my questions. I am a patient, and I respect my doctors, but insurance, and our money goes to pay their bills. I deserve answers. Doctors are just contract workers. I think it’s always important to treat them with respect, but I also believe that we should be treated like peers. If I want/need more information, I deserve to have it.
They would like me to start radiation, and possibly enter into the following clinical trial (clearly I’m going to need more information):