Scanxiety

Experienced by quite possibly every single cancer patient.

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  1. Suffering from ‘scanxiety’
  2. What is meant by the term, ‘scanxiety’?
  3. How can ‘scanxiety’ affect you?
  4. When do people with cancer experience ‘scanxiety’?
  5. How I coped with scanxiety

Suffering from ‘scanxiety’

The anxiety I felt like a caregiver, and we felt like a couple, was already on the verge of being out of control as a consequence of my husband’s Stage 4 cancer diagnosis.

Would my husband’s cancer respond to the treatment? The stakes were high, and his future and our future as a family rested in the science.

The biggest question we had was, ‘Will the treatment work?’

In the weeks and days before any and every scan result, our cancer chat revolved around nothing other than what the scan would show.

‘Can you feel the anti-cancer drugs doing anything?’ I would helplessly pester him… ‘Are you thinking positive thoughts?’

I would then torture myself by finding the answer to the question, ‘Is there anything we could or should be doing to help the treatment shrink his cancer?’

My repetitive thoughts swirled as I panicked on repeat; ‘Shrink the cancer. Just work. Surely the treatment will work? Why would they have treatment if it is not going to work?’.

During the build-up to every scan, the questions, scenarios, and possible outcomes bounced between us in seemingly endless, fragmented conversations.

We would both never sleep the night before a consultant oncologist’s appointment. Lying awake in bed, we instinctively knew that the same thoughts were pinballing around our restless heads.

Yet during the car journeys to hospital, we rarely spoke. The tension was palpable. The thick atmosphere was only punctured by some flippant remark or an attempt at a joke.

Once I remember looking down in the car at the base of my neck and seeing a huge stress rash breaking out. My body outwardly protesting against the strain I felt on a cellular level.

During the long walk from the car to the hospital lift, despite our shifty sideward glances, we found comfort in holding each other’s hands in a subconscious show of solidarity.

The ‘scanxiety’ was real.

Gripping, intense and crippling.

Ah, scanxiety; yet another unforeseen and indirect effect of cancer and its treatment.

What is meant by the term, ‘scanxiety’?

When I first heard this term, ‘scanxiety’ forced a smile against my will to break out on my strained face.

Because when you think about it, it is a great phrase that sums up the terrible feeling resulting from the emotional stress of receiving the results of a recent scan.

It can be defined as the anxiety-filled reaction to a pending test result oncologists use to discover the type, stage, and spread of cancer.

Waiting for cancer test results

‘Scanxiety’ can be experienced for a whole range of diagnostic tests, for example, mammograms, blood tests, spinal taps, ultrasounds, biopsies, x-rays, as well as MRI, CT, or PET scans.

There are usually two sources of worry and stress which accompany ‘scanxiety.’ Firstly, there is the fear of what the results may or may not show. Secondly, there is distress surrounding the experience of the unknown procedure.

How can ‘scanxiety’ affect you?

When this type of anxiety grips you, the unwanted adrenaline in your body has no escape.

Scan-associated distress can be associated with depression and generalized anxiety.

Symptoms such as intrusive thoughts and irritability can invade your every day and introduce sleeplessness to your nights.

‘Scanxiety’ can affect your social function, effectiveness in the workplace, and has the ability to sap any enjoyment out of life.

This particular form of distress will profoundly impact some people facing cancer.

Concerningly, as a result, they may even try to delay having their scan or another crucial medical testing during their treatment phase or post-treatment follow-up plans.

When do people with cancer experience ‘scanxiety’?

This Pre-Scan Syndrome, sometimes referred to as PSS, can be experienced at any point throughout your journey. Sometimes patients (and their caregivers) can be affected by this type of anxiety for a long time.

How badly you are affected by this type of anxiety and distress depends upon the impact the scan results will have on your own particular situation.

Waiting for scan results

The first-ever scan results at diagnosis can be a harrowing fate to await.

You are entering the lion’s den for the first time, already on the back foot being consumed with the full range of possibilities and potential outcomes.

Throughout your treatment plan, scans take on the role of being one of the best tools in which oncologists have to detect treatment effects. They can provide an answer to the big question, ‘Is the treatment working?’

Regularly having to wait and see whether or not your cancer is responding to treatment is terrifying, to say the least.

Your mind can be flooded with negative thoughts, which you may struggle to keep under control. In such distress, your quality of life can be significantly damaged.

Scans can also be carried out as part of the normal follow-up whilst you are in remission. In this case, the anxiety experienced may be more rationally controlled depending upon your circumstance.

In the survivorship phase, often cancer survivors feel like they must permanently live in the shadow of reoccurrence. They rarely can relax and somehow have to exist in a state of limbo going from scan result to scan result.

This is why finding ways to control the stress of ‘scanxiety’ can become super-important to maintaining your overall wellbeing.

To be able to manage ‘scanxiety’ effectively could make a massive difference to your life, empowering you to enjoy the very life you are so hopeful of living.

How I coped with scanxiety

‘Scanxiety’ can be effectively controlled, or at least dampened, with the same coping strategies often used to deal with other anxieties.

Going through all that I did, I now realize that I was in such a stupor of shock that the way which I coped with ‘scanxiety’ was clearly not based on any rational or thought through coping strategies.

I simply followed my gut-reaction reaction to survive the invasion of negative thoughts I was experiencing.

In the weeks and days leading up to the scan or test results, I found a lot of strength from online forums or support groups on social media. There I was able to connect with others who understand in real-time anonymously. More often than not, very late at night when everything seemed worse.

However, the most instant way to calm me was by turning my attention to my breathing.

I used to go into a self-soothing moment of inhaling as deeply as possible and then blowing the air out in a long exhalation. This probably wasn’t appreciated by anyone around me; even the kids would copy me. Yet because I found myself doing it so instinctively, and it made me feel so much better, I was reluctant to try to stop for anyone.

Going for a massage or a reflexology session also became a go-to way of stress management, which really worked for me. Even though I felt as stiff as a board, I definitely was able to find some relaxation and inner calm.

Perhaps it was the aromatherapy essential oils used, the comforting touch therapy of another human being, or simply the time alone, which helped, but it did work.

As a result of responding well to aromatherapy, I used to carry around a travel size aromatherapy cream which my reflexologist gave me. I would put it on my wrists like perfume and have it in my bag for the waiting room.

On the actual day, we also used to turn the dreaded oncology appointments into an excuse for a date together. As new parents, the opportunity to have multiple babysitters volunteering to look after the kids, the window of opportunity didn’t escape us! So, we used to go to a little well-thought-of restaurant not far from the hospital, order their famous lasagna, forget about stress, and enjoy each other’s company.

Other personally important coping strategies that I naturally turned to were the use of denial and delusion.

I simply thought that this wasn’t happening to me. I clearly knew that it was, but the first time I pretended to myself that I was back living in my pre-cancer world, the seconds of relief I experienced was so freeing. Not that I recommend living in a permanent state of fantasy, but it may just give you a refreshing moment’s peace.

Other ways to control anxiety before a test result for cancer are;

  • listening to music
  • positive self-talk
  • doctor prescribed medication
  • exercises such as yoga or walking
  • reading self-help books
  • repeating a comforting prayer or mantra
  • talking to your supporters
  • meditation, and mindfulness.

I genuinely hope that you can cope better than me as living your life under the burden of any form of anxiety is not fun.

The only way to handle anxiety is to first acknowledge that you are suffering from it and, secondly, confront it by trying out some known coping strategies.

Control it before it controls you.

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Recommend to others facing cancer, on support forums, social media, in person or by email. Thank you.

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