After her secondary breast cancer diagnosis, Rebecca had 14 months of bad scan results before she had one that showed her cancer was shrinking. She gives her tips on how to manage Results Day.
Scans are very emotive
For reasons I don’t quite understand, there are pictures of fish on the MRI machine I’m usually in. You only see them when you’re lying down on the machine bed, and it took me a while to notice them at first, because they’re part of a larger, slightly trippy design that covers the MRI’s arch. Now, though, whenever I’m having a scan, I look out for their elegant tails and begin to ponder the outcome of this latest scan. Put bluntly, these fish make me wonder whether I’m getting better, or if I’m a stage closer to death.
It’s a dark but inevitable train of thought, even though the fish exist for the sole purpose of trying to make me think of something else. Scans are powerfully emotive.
Every few months there’s another Results Day
Scans are the only surefire way to find out if treatment for my secondary cancer is working. I usually have a fairly clear indication that chemo isn't working when my back starts hurting – always in the same place, where there’s cancer on my spine – but obviously I can only be sure of the position once my oncologist has translated the scan report for me. So, every few months I face another scan and, more significantly, another Results Day. It causes me to feel a sense of trepidation more significant than when I received the results of my law school finals.
And of course, it's not just me who worries. I have an incredible husband, wonderful family, and a support network of friends that I can't praise highly enough. Probably 95% of them have expressed to me at some point their increasing nervousness approaching Results Day. They want to support me, but there's literally nothing they can do to help the results fall in my favour.
Instead, they're left waiting for me to report back, keeping their fingers crossed for good news and having to deal with what comes, even if it is the news that cancer is getting the better of me. Putting that into black and white, I'm struck by how equally tense Results Day is for them.
I wasn’t prepared for a good scan result
I know that my family and I are not alone in experiencing ‘scanxiety’, but how best to manage it?
First up I should say that I recently received my first positive scan result in the 14-odd months I’ve had secondary breast cancer – and positive in the sense of good news for me. Finally (finally!) a scan showed that my cancer is starting to shrink, having spread like wildfire for the past year. So, hooray! I feel truly blessed.
But the great news was unexpected. After a year of bad scan results, I was a seasoned pro, accustomed to telling friends and family that the cancer had spread, chemo wasn’t working, a new treatment plan was being implemented, and so on. Prognosis was discussed regularly on Results Day. I faced each scan with a sense of sad inevitability, regretfully confident that the scan results were going to disappoint yet again.
I don’t share my deepest fears with everyone
I won’t always share this negative view with friends and family, because there’s no point worrying them if there remains an outside chance of good news. I tend to keep my gut feeling to myself these days, but make it clear that, if it is bad news, my oncologist knows what the next step can be. She's wonderful like that.
Once, I was vocal about my feeling that the scan results would be favourable. I got my hopes up, as well as the hopes of family and friends. When Results Day came, though, it was really bad. If memory serves, it was on that occasion I learned of my brain mets.
So, as cancer patients, how do we manage scanxiety? As I’ve said, we have to have these scans if we want to find out if and how treatment is working. They’re a crucial part of any treatment plan and a wonderful resource for planning treatment. A good Results Day, as I had recently, can give you a mental boost like nothing else. A renewed purpose to life. But that doesn’t make them any less stressful, and I’ll admit to the odd sleepless night before a scan.
Rebecca's five tips for managing scanxiety
1. Talk it through
Confide in your partner, best friend, counsellor – it doesn’t matter who, but tell that person why you’re worried. Articulating a fear can make it seem less scary, and there's nothing to be embarrassed about in having feelings of scanxiety.
2. Buddy up on Results Day
Take at least one friend or relative who’ll be a calming presence if the news isn’t great.
3. Make a list of questions for ‘good’ and ‘bad’ scenarios
If you're like me, your mind may be prone to going blank after hearing the results, good or bad. It's helpful to have thought in advance of what you might want explained in either scenario.
4. Treat yourself
My wonderful mum tends to accompany me on scan days, and we usually go for a nice lunch afterwards, so that we can concentrate on that rather than the scan (and impending results). On Results Day, plan something nice for after your appointment, so that you can either take your mind off bad news or celebrate good news.
5. Play a proactive role in fixing your scans
If you know it'll be ‘towards the end of the month’ for example, you'll be fretting for weeks. Uncertainty isn't helpful. If you can fix your scan, I believe you'll be less likely to worry for the whole month and can mentally park thoughts about the scan until the week of it. Also, it saves you having to answer endless questions from loved ones wanting to know the date. I don't know about you, but I never like answering cancer-related queries with ‘I don't know, I'm hoping to hear soon.’ That in itself causes me stress.
It’s a lot to go through
One of my best friends had a scan recently and, as a result, said she had a new understanding of all the treatment and tests I go through. This is because she found it stressful enough enduring one scan, but was aware I have to undergo the experience on a regular basis (as I'm sure many of you do). This isn’t to be sniffed at – we’re brave for enduring all that we endure as part of our treatment, scans included, and should pat ourselves on the back every now and again. Perhaps by way of a nice treat.
Hear more from Rebecca on our podcast channel.