It’s not an official medical term, but “Scanxiety is cancer patients’ fear and worry associated with imaging, both before and after a test (before the results are revealed).”
In early-stage patients who are successfully treated and have no evidence of disease, the underlying fear is about cancer returning and the dreaded implications.
In metastatic patients, the fear is based in scans’ potentially revealing a lack of treatment effectiveness or disease progression.
Thus, at either stage of disease, scan results may portend death. Medscape
Because you’ve already had a ‘cancer diagnosis’ (although 9/10 mammograms are good, and only 1/8 women get breast cancer, etc), you know what it is to have been told ‘you have cancer’, and it’s entirely possible that it could have spread elsewhere… so those concerns are not easily dismissed – even if my mind has talked myself out of it, my body is clearly doing weird things, on some kind of high alert! I thought I’d got the all clear in October, and then, here we are again!
There’s some good tips on this blog post on coping with scanxiety, and I’ve definitely been doing the distraction thing (been playing around with kitchen planning, alongside Netflix!), and trying to determined when the result is likely to be “so I don’t sit by the phone all weekend wondering if I am going to get a call”.
I know that the team at my hospital have their MDT meetings on a Monday (finishing about 2pm), so I was waiting to hear if the MRI scan I had last Tuesday on my spine had come back (I’m not too worried about the pathology from my surgery last Thursday, as the surgeon looks so certain it’s just a lipoma). The MRI scan had been triggered by something spotted on the CT scan for the lung a couple of weeks ago (which had come back clear). It got to 5pm, and heard nothing, so had assumed that was it, and was chatting with my friend Cathy who had come to keep me company. Then one of the lovely BCNs rang around 5.15pm to say, ‘sorry, one of those days’, but your MRI scan hasn’t come back yet, so assume after next Monday MDT, although if there’s anything we can tell you earlier, we will.
I headed off for dinner with my friend (we use Manchester Confidential 50% off deals list), determined to enjoy ‘week 3’ of this round of chemo. It got to 7.30pm, and that ‘No number given’ was ringing my phone – it was another lovely BCN, saying that my scan had come in late, still needs a proper discussion next week, but nothing cancerous (so we’re stage 3, not stage 4 cancer, and post-surgery I guess officially NED). I heard ‘it’s a flangeloma’, we couldn’t work out quite what that is but my mum said maybe ‘phalangioma‘ – where patient’s finger gets in the way?
Anyway, I posted the following (and yes, had the chocolate fondant, bit disappointing, but rest of meal was good):
So, now, the rest of the week (after asking Erika if it was Friday – well, I’ve not been to an office since September!), kitchen planning tomorrow/Thursday, the Christie for bloods/chat with oncologist Wednesday, stitches out at the hospital Thursday (and find out what that word was), and onto weekly paclitaxel on Friday, so we’ll find out what side-effects that wants to give me, and what the following weeks look like! All treatment now is basically to catch any stray cells, and try and prevent a recurrence.
*Necklace from Charlotte Walker Silver (via my mum for Christmas) 🙂
3 replies on “[CANCER] Scanxiety and #BreastCancer”
[…] On Monday I got to celebrate that whatever was on my spine, was not cancer, so I am clearly #notstage4 cancer, so I remain NED! On returning to hospital on Thursday to have stitches removed, it appears that I have a hermangioma on the spine – most people live with these undiagnosed, they are benign, and rarely require treatment, although the MDT meeting on Monday will discuss it – most likely is that I will have extra CT/MRI scans to keep an eye on it. I’ve not gone back to work since Chemotherapy Round 3 as there’s been so much going on, but am taking the opportunity for some life admin, getting myself out on walks, and kitchen planning… around the many hospital appointments! We’ll see how I deal with this new drug this week, and then make further decisions about working from there. […]
[…] that you could happily live in ignorance of for years – and I mean happily – because Scanxiety is the worst! Was sent some more tips on managing scanxiety this morning […]
[…] like the world has a MAJOR case of Scanxiety … the feeling that the other foot is just about to drop, huge amounts of uncertainty about […]