Stable Until Proven Otherwise (SUPO) - my way of approaching 'scanxiety'

It's been quite a while since my last post (about how Quantum Physics gave me Brain Cancer 😏) and instead of writing a post to catch things up since November 2024 (attending patient advocacy conferences, losing a dear friend to brain cancer, fueling my desire to make a positive difference, ...), I'm writing today about something topical and timely as I prepare for my 16th diagnostic MRI.  With additional MRIs I undergo for a research study, it will be my 24th time in the MRI tube and I feel it's only natural to reflect on this routine and what it means for me.

Example of an MRI machine, not one that I've been in...

It's quite natural to feel a sense of anxiety leading up to these MRIs, knowing that we plan them so we can learn when a tumour has grown, spread, or 'progressed'.  It's usually about knowing when things are getting 'worse', so we often speak about the scan anxiety, or "scanxiety" leading up to these appointments.

Like many others living with brain cancer, I'm currently on a schedule of quarterly MRIs, so every three months I have an appointment for a new diagnostic MRI and a similarly timed research scan.  My next scan is two days away.  In writing today's post, I reflect that I'm fortunate to be on a specific targeted therapy that has been shown to slow the tumour growth and prolong the time before scans show tumour progression, which helps me to shape how I think about my own scheduled scans.  The clinical trial for my therapy has now reached the point where MRIs for half of the patients taking the medication have shown tumour progression, so I know the day will come where my scans will also show progression.  The therapy isn't a pause button, it's a slow-motion option as far as the cancer growth is concerned.

Knowing this allows me to intentionally frame how I think about the scans.  As of my last scan, my tumour isn't growing enough to make a meaningful difference in the images from each MRI session (i.e. based on RANO 2.0 standard criteria).  From my perspective, and perhaps in a way reminiscent of Erwin Schrödinger's famous quantum physics thought experiment with a cat sealed in a box, it means I'm stable because we haven't found any evidence to refute the claim.  I'm 'Stable Until Proven Otherwise', where each new scan is an opportunity to fail at 'proving otherwise'.  I think about my scans with a sense of "scanticipation" - a hopeful anticipation that each scan might fail again, in failing to detect meaningful tumour progression.

I know that at some future scan, the images will tell a different story by eventually 'proving otherwise', and that I can't yet know which scan this will be.  I look back to the October 2022 scan that started this all by clearly showing a non-stable tumour, and know that we quickly developed and followed plans to do something about it.  When the day comes that a future scan proves my stable status has changed, I'm confident that we'll be able to develop new plans and to do something about it.  

Some might see viewing things this way as a bit of mental trickery, but it's one way I've found to try to overcome the normal and quite human negativity bias that pervades many of our experiences, and without ignoring or denying the reality ahead or offering false hope or toxic positivity.  I'm sticking to facts: the evidence so far confirms I'm stable, and until there's evidence to the contrary, I'm SUPO  😀  I'm able to hold two sets of plans in mind: one set of plans for the scan that fails to prove otherwise, and another set of plans for what to do if a scan or other clinical clues suggests that we need to do something about the growing tumour.

The therapy I'm on only works for a subset of brain cancer types.  Many others approaching these scans or similar routine follow-ups in other cancers or other diseases and conditions might not have the option of a slow-motion replay that my therapy affords me, but this option to reframe how we think about the steps and check-ups along the way is always there.  The value for me has been in not fixating on the "what if???" scenario for a scan that 'proves otherwise', but instead to hold onto both sets of "what when?" plans for both scenarios.  I won't have all the answers, but I'm not left completely in the dark.