If you have been diagnosed with cancer, then you are likely very familiar with SCANXIETY- the horrifying blend of anxiety and the scans that are used to diagnose, inform treatment decisions, evaluate the effectiveness of treatment, and/or look for cancer recurrence/spreading.

Yet Scanxiety is more than anxiety… it is more than a feeling of unease about the unknown.

If you have had a cancer diagnosis, the potential unknown is specific, not generalized like anxiety is. If you have had a cancer diagnosis, scans are no longer unknown, because they happen quite frequently compared to the general population.

For a cancer survivor, those scans brought tangible evidence that we have/had a life threatening illness- nothing murky to it. When someone is confronted with or witnesses a life threatening experience, they run the risk of developing PTSD. If you wish to understand that more, check out this blog I wrote: PTSD and the Cancer Warrior.

Recently I was talking with a fellow cancer survivor, who is also a mental health expert, about the possibility of doing a virtual workshop on Scanxiety, with the intention of giving attendees tools to help them cope with it. I was sharing my ideas of a potential outline, which always includes an educational discussion to offer a foundation for why I promote specific coping strategies.

As I was talking about my ideas for discussing post traumatic stress disorder (PTSD), which ultimately scanxiety is, this descriptive phrase came out of my mouth:

Scanxiety… it happens because frankly every time you have to go for a scan, it is like returning to the scene of a crime

We both stopped talking, and let that wash over us. That was it, a perfect metaphor for understanding why scanxiety is more than just anxiety… more than something you can ‘control’… it is your re-experiencing, on a very visceral level, the earth shattering moment(s) that lead to everything changing in your life. Just like the turmoil that happens to people when they return to the scene of a crime, it rattles you to the core.

Scanxiety includes replaying in your mind, over and over again, what has happened or what you fear will happen. It’s the complete zapping of physical energy as your body relives the trauma of being diagnosed and holds the tension of what this new scan will find. Scanxiety becomes the black hole that sucks the hope and light out of your life, replacing it with fear. Scanxiety leaves you wondering if you will ever be the same again.

Scanxiety can last for varying amounts of time, and often it will happen in phases. For example, I had a PET scan that should something by my chest wall- a scary place for breast cancer patients. It was not lit up like a Christmas Tree but they decided that a CT Scan was warranted.

In my mind, I stayed relatively focused, because I knew I had not been experiencing pain and I knew that scans can read like false positives. But my body had a very dramatic reaction to it, it was as if someone had sucked out all of my energy. This chain reaction of my body is an excellent example of how potent PTSD triggers are- and it persisted until I heard the “all clear”.

Scanxiety is a very real issue for cancer survivors, and addressing it takes time, persistence, and excellent support. A big piece of addressing scanxiety is allowing your body, mind, spirit and self to explore what you have been through. For most of us, that seems like a daunting task- which is why having some sort of a roadmap is so important- for this roadmap gives you an opportunity to ground yourself even in the midst of things falling apart.

You may wonder where to begin… and my response to you is, Start Where You Are, the FREE survivorship self-assessment tool that I have created. Click on this link, and it will bring you right to it.

-Stephanie McLeod-Estevez, LCPC, is an art therapist and breast cancer survivor, and a former oncology counselor at the Dempsey Center. She began Creative Transformations to help others who are healing from a life threatening illness or injury. Through Creative Transformations, she works with people in person and online to offer cancer coaching, an Art as Therapy program, workshops, and this weekly blog. Check out the individual packages, the self assessment tool, and virtual workshops.  Sign up today so you never miss a blog and find us on Facebook, Twitter and Instagram.