What is scanxiety?
The dictionary definition of scanxiety is:
Scanxiety (n) “scan zi et ee”: Anxiety and worry that accompanies the period of time before undergoing or receiving the results of a medical examination (such as MRI or CT scan).
Scanxiety is basically the term that refers to stress, fear & anxiety that comes before having a scan, having the actual scan & also awaiting the results. It has even been likened to PTSD.
Why does it happen?
During stressful times, your body triggers the “fight or flight” response and releases a combination of hormones such as adrenaline. Your heart rate increases, you get sweaty palms, blood pressure can go up and more. While you are going through treatment, every scan is a milestone to see if the treatment plan is working. When you’re done with cancer treatment it’s the constant worry of whether the cancer has come back or spread.
There is also the uncertainty & constant worry knowing that when this scan is done, there will always be another one. Once you have had cancer, scans are part of the journey. The scan itself can cause anxiety in terms of needles, liquid you need to drink (I have had my fair share of these from iodine to barium, a disgusting chalky white substance, aniseed tasting liquid and more), and the scan machine itself, especially if you are claustrophobic.
Symptoms of scanxiety
I have heard cancer scans likened to a “sentence” of sorts. You’re “cancer-free for the next 3 months” and then you serve that sentence, until your next “hearing”. After having breast cancer at 28, hundreds of scans, operations, chemotherapy, Herceptin, hormone treatment, long term side effects and more, the thought of cancer is never far away.
Those that have had cancer will understand that scanxiety can cause elevated levels of scan anxiety and it is a time when I do not act like myself. In fact, I can be compared to an irrational, emotional, unreasonable person for weeks before the scan.
I find myself distracted, playing out every possible outcome, hoping for the best but preparing for the worst. I have also been knowing to eat a lot of peanut butter. And after 12 years, this has not gotten any better. I recently underwent my estimated 60th scan (a PET/CT), and I assure you, this is the real deal.
These are some of the scanxiety symptoms I experienced:
- Elevated levels of stress and anxiety
- Sleeplessness
- Poor concentration
- Difficulty coping with daily life
- General irritability
- Nausea
- Increased heart rate
- Rollercoaster emotions
7 Tips to cope with scanxiety
You are not alone. According to studies, more than 80% of cancer patients suffer from this. We may not be able to completely overcome it, but there are some ways I manage my scanxiety:
1. Plan ahead
I try and plan ahead for the scan in order to mentally & emotionally prepare. It’s not always possible, but I try not to have scans at times when I have to wait for long periods for the results as this amplifies the stress, e.g. leading up to a long weekend or more recently when my oncologist was on leave so I waited longer for the results!! Not a good idea.
2. Embrace your feelings
Don’t fight how you are feeling. I try to accept that it is OK to feel how I feel & to not dismiss it. If I want to cry, I cry. If I feel angry, that is OK too. I have found that the more I try to forget I am having a scan, or ignore the emotions I am feeling, the more I tend to think about it and the worse I feel.
3. Create a “worry” zone
This is something new I did for my last scan. I actively carved out a set time to worry and to feel anxious & allow myself to process my thoughts & feelings. Giving myself permission to worry actually made me feel more in control. Everyone will say “don’t worry it’ll all be OK,” but I need time to process all the options and prepare myself for the different outcomes.
4. Use visualisation techniques
I try to picture the best possible outcome, rather than the worst. Lean into those feelings of positivity & know that if the news is not good, you’re a step ahead as you’re empowered with the results. I’ve tried meditations, breathing & visualisation techniques using a number of apps or youtube videos.
5. Listen to music
I distract myself with music before the scan & while I am prepping if possible. Music is one of my favourite things in the entire world & always lifts my spirits. Not only that, it taps into my emotions. For the last PET/CT I played my ultimate chemo playlist that I had created a while back with feel-good songs I love. It can be an instant life me up or calm me down.
6. Let mantra’s help you
During the scan, I constantly repeat to myself “this too shall pass”. It helps me cope with the small space in the scan machine, of which I am not a fan & the discomfort of having to keep still for long periods of time. Others have recommended thinking of one of your favourite places, things or memories while having your scan & staying focused on that.
7. Lean on family, friends & your cancer community
Due to COVID, this was the first year I had to do my scans alone. I thought it would make little difference but it really made me realise how having the presence & support of my family & husband at my scans made it so much easier to cope. If they can’t be with you at the scans, lean on them for support leading up to and for the results.
I also received overwhelming support from the online cancer community & the Machi Filotimo Project where I am proud to be a cancer champion.
What scans have I had
These are the regular scans that I have every year for the past 11 years:
- Mammogram – I have a left breast mammogram as the right side was my mastectomy)
- Ultrasound/sonar – chest & abdomen
- Chest X-ray
Scans I have had when I have experienced symptoms/picked up something on one of the above scans & further investigation has been required:
- CT Brain
- Left shoulder X-Ray
- Barium Swallow
- Ultrasound Pelvis
- PET/CT whole body (uncontrasted)
- PET/CT whole body (contrasted)
- Bone Scan whole body
- CT Abdomen
- CT SInus
Does scanxiety ever go away?
In my experience, no. I have been cancer-free for 11 years & I still find every scan difficult. It is not the scan itself. It is more the build-up and the emotions that come with it & that moment of waiting to hear the results. The trouble is that once you have had a scan and have heard the words “you have cancer” you cannot undo that. Some scans have been an easier “all clear” but many have had the dreaded “more investigation needed” from symptoms like Inflammation, swollen lymph nodes, a suspicious bone fragments that prompt the oncologist to send you for more tests & scans.
Scanxiety is a double-edged sword
A scan is a double-edged sword. On the one hand, my ultrasound & mammogram are what detected my aggressive stage 3 HER+ breast cancer at 28. And a PET/CT picked up extensive inflammation in my body. And every scan since has been a window into my health, highlighted areas to focus on, an early risk detection monitor so to speak. It is also my safety net that reassures me the cancer has not come back. On the other hand, it feels like I am constantly waiting for the verdict on my life. Will I live a long time? Will I grow old?
I don’t know the answers. What I do know is that I am living every day to the full & no scan or result is going to stand in my way of doing that