With easier access to patient medical records, via online portals, and the ability to search terms and phrases in medical literature, I feel I’m inching closer to a better understanding of neurology, oncology and trauma of the brain. I don’t know if it helps having a complicated patient with an indication list of stroke, trauma, headache, sinusitis, syncope and astrocytoma. Having these indications in a single skull likely makes pinpointing which is which very difficult.
With having multiple treatments in 1999 (G3 Anaplastic Oligoastrocytoma treated w/ surgery, radiation and chemotherapy) and 2013 (G4 Secondary Glioblastoma treated w/ surgery, re-irradiation and chemotherapy), the primary focus is detecting brain cancer recurrence/ progression. This involves looking at soft tissue structures, vascular changes, signal enhancement and radiation effect. Mix in geographic terms of the brain, like occipital lobe, temporal horn, centrum semiovale and others, navigating MRI scans for a lay person may be like driving the streets of Boston before GPS.
Add in terms like radiation-induced cavernomatosis and exvacuodilatation, whether evidence of or mild, and its like getting directions in another language. Every now and again, we recognize the term “unremarkable” with the phrase “holding stable”. The question is do you ignore the words you don’t understand or look them up. Maybe you don’t want to go to that part of Boston. Does visiting improve your experience/ quality of life?
Susie chooses not to know what these terms mean. She’s happy with knowing there is no immediate follow-up/ action. I read the report in detail and lookup terminology while viewing/ comparing current scans to past scans, mostly in prep for her next follow-up. Having access to patient medical records from MD Anderson Cancer Center helps us revisit appointments in our own way.