That feeling when your radiologist and oncologist disagree…

I had an MRI on Friday. The neuro-radiologist said it looked like there was tumor growth compared with my last MRI (from November 2010). My neuro-oncologist and Super Awesome Nurse disagreed with the radiologist and think he's on crack. (I’m paraphrasing.) They said this specific radiologist tends to be overly critical in all his readings.

The neuro-onc and Super Awesome Nurse compared the scan with EVERY. SINGLE. SCAN. from the past two years (in front of me) and showed me how my brain has been getting better and has not gone in reverse. Good to know.

However, they said, just to be on the safe side, it would behoove me to come back for another scan in eight weeks (as opposed to the 12-week schedule I've been on for the past year). This is also a good idea because I've been having odd seizure-ish sensations characteristic of where my tumor is located. My brain could be telling me something that cannot be seen in a picture (it would take the growth of millions of cells before anything could be visible in an MRI).

Here’s a weird thing... ever since my 16th month of Temodar my oncology crew has been saying it wouldn't be a big deal if I wanted to stop taking the drug, but I kept up with it partly because I knew I could and partly because I had the whole "24 months" goal in my head. That being said, at this visit they did NOT say anything about me stopping Temodar. This could be because they know my mind is made up... or maybe because they are thinking, "Hmm, it wouldn't be a bad idea to pack her full of this poison for as long as possible."

None of this freaks me out. Seriously. If you are freaking out, quit it! I think I am doing well. Brett and Bob think I am doing well. My medical team knows I am doing well.

Today at work a co-worker asked me how the scan went. And me being me, I told him everything I just wrote. And he seemed freaked out. I could tell by the look in his face. He felt compelled to hug me and let me know that "a lot of people are thinking about you, and care about you. Be strong."

While that was really nice to know, I felt bad. I felt like there are many other people in worse situations that are more deserving of that compassion.

And now on to night one of the 22nd month of Temodar.

Liz Salmi

Liz Salmi is Communications & Patient Initiatives Director for OpenNotes at Beth Israel Deaconess Medical Center in Boston. Over the last 15 years Liz has been: a research subject; an advisor in patient stakeholder groups; a leader in “patient engagement” research initiatives; and an innovator, educator and investigator in national educational and research projects. Today her work focuses on involving patients and care partners in the co-design of research and research dissemination. It is rumored Liz was the drummer in a punk rock band.

https://thelizarmy.com
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From beginning to end: this was my EEG experience