Surviving Scanxiety in Childhood Cancer Survivorship

Survivorship Matters Blog By CAC2 Member Mary Beth Collins, PREP4Gold

SCANXIETY –  just the word generates response in the childhood cancer community. One might tense up, suck in some air, get nauseous, or experience a tightening of the chest. There is no minimizing the concern that families endure before the scanning process and receiving the results that confirm the potential of cancer in your child’s body. It is a very sensitive, stress-inducing part of the childhood cancer journey.

What is Scanxiety?

Scanxiety – or scan anxiety – is a relatively new term. We didn’t have such a reference when my son was scanning regularly after being declared NED (No Evidence of Disease) in 1999. The word still hasn’t been accepted in Merriam-Webster’s dictionary.  The earliest reference I can find is in a parent blog in 2007.  But for today’s families dealing with childhood cancer, there is no question about its meaning:  it is the fear and worry one experiences before undergoing, or receiving the results of, cancer-detecting scans. It also includes testing that replaces scans in detecting recurrence. In closed Facebook groups, it is a regular topic of conversation where comments and images are shared representing the impact of the emotion on them.

One of the groups I’ve been involved with for years will post routinely about scanxiety, providing support to anyone preparing for scans in the upcoming week. In response to those probing posts, you’ll find many responses with confirmations that the anxiety is very much alive and well. Some will include images or GIFs found easily by browsers when referencing scanxiety:

What Scanxiety Is, And What It Isn’t

An article published in ASCO Connection entitled “Scanxiety and Terror Management Theory” by James Randolph Hillard, MD, asks a basic question:

Which of the following is true about scanxiety?

  1. It is rational.
  2. It is irrational
  3. It is nearly universal among patients with cancer.
  4. It attenuates over time
  1. Choices 1, 2, and 3 are correct.
  2. Choices 1 and 3 are correct.
  3. Choices 2 and 4 are correct.
  4. Only choice 4 is correct.
  5. All choices are correct.

The correct answer is A.

He explains: “Scanxiety is rational because the results of each scan can, literally, be a matter of life or death. It is irrational because patients feel it regardless of the actual probability of bad results. It really is nearly universal among patients with cancer who are getting scanned as part of their disease surveillance. It does not attenuate over time.”

So with it being rational and irrational, universal, and never lessening over time for many, are families doomed to continue to live on this ever-turning, emotional ferris wheel? Does your child live in a world where he/she is truly “cancer free” or are you simply “waiting for the cancer to come back?” My son’s odds for neuroblastoma to return was higher than the odds of him remaining NED.  I can fully appreciate the fear of the cancer returning, but the distinction of these two worlds is important.  Yes, the fear is rational. The medical team is scanning your child routinely because of risk. There is a vulnerability that when re-tested, results could be positive. Your doctors monitor the status to confirm that the cancer has not returned, or to respond immediately to address a positive test result. It is good to know your child’s vulnerabilities for a positive test result. If you don’t, have that conversation with your doctor. Learn what the actual odds are. And note when vulnerability odds change for the better, which usually happens with time. Families are often told at the beginning of this cancer journey that statistics don’t apply to them. But when learning about the possibility of recurrence, you may discover that odds are lower than you think. These odds are helpful to know. You may discover that your fear is actually greater than the level of the documented risk of relapse. It may be comforting to learn that the risk of relapse is much lower than assumed.

Having that said, we families have already lived this scenario. Our children have needed scans, and the results confirmed that our worst fears were reality. This is what feeds the irrational aspect of the anxiety. We know the worst scenario of the testing because it has already occurred. If you are like me, you never reclaim the confidence that your child will remain healthy for the remainder of his/her life. It is almost easier to always be prepared for the news of positive scans because we’re not quite sure how we survived the horrifying news the first time around. It is somehow easier to remain guarded. In essence, it is easier to live in the world of “waiting for the cancer to come back,” where you’ll be watching and ready to respond, instead of “enjoying NED until proven I need to worry.” Just having a test isn’t the confirmation of positive results. The test itself doesn’t indicate your child is no longer NED. The anxiety comes from a place where an assumption of the results is already made. Possibility is not the same as probability, and that distinction is important. Instead of staying in the present with a child with NED, the irrational anxiety is living out your worst fears before they take place. The irrational nature is very understandable, but it is excruciating.

Is scanxiety universal? I would imagine all parents have endured some level of reflection and fear. I couldn’t find a study that reports on the level of anxiety experienced by parents to attest to its universal nature. I also couldn’t find much research on its staying power. Does it attenuate over time? It is hard to say, since post treatment scanning varies by diagnosis. Scans can get replaced with routine blood and urine tests that become part of the annual evaluation. So the scanxiety of scans can blur with the annual evaluation routine, and some families experience a resurgence in anxiety every year. I have read many social media posts where parents declare to continue to experience scanxiety 8, 10 or even 15 years after NED. In preparing for this blog, I tried to determine when I let go of a rise in fear when visiting the hospital for evaluations. I don’t think it was a particular year; it wasn’t determined by a set time. I didn’t feel like I finally “earned” the ability to no longer worry.  For me, the act of letting go instead was determined by my decision to change my attitude. I insisted I would not let fear have its way unless it was supported by facts. I reversed the order of scanxiety: concerning results would earn my fear rather than unleashing escalating fear leading up to testing and then waiting for results.

So, no I don’t believe parents are doomed to continue to live on this ever-turning, emotional ferris wheel caused by testing time. Further, I don’t believe the anxiety is healthy for parents, nor their children.

 

Why to Reduce the Anxiety

Anxiety isn’t good for anyone. It isn’t good for oneself, nor for the family. And families dealing with childhood cancer get their fair share of anxiety! We’re afraid of what we do, and what we don’t do. And we’re afraid the cancer will come back. I began my post-treatment journey like a soldier on the line in a hot zone. I watched my son for every single symptom.  I took his temperature daily.  I called the Hem/Onc clinic regularly with concerns. One day I caught my reflection in the mirror looking my son over for symptoms. My reflection reminded me of one of our nurses on the pediatric floor. I realized that while my son was NED, I still treated him very much like a patient.  I promised him – I promised myself – I would do better. I decided right then that should he relapse, I wanted him to have enjoyed time completely free from cancer, and treatment as a cancer patient. My behavior was still of a parent with a child in treatment, not one declared NED. I wanted to be in a healthier frame of mind. I wanted us to enjoy what we fought so hard to achieve. I wanted to live a life of gratitude when other families were still fighting. But more than that, I wanted my entire family to be healthier than living our life in fear. I wanted to reclaim as much wellness as I could. We deserved to heal from all of the trauma.

I hear some parents say: “But I don’t talk about my fears in front of my child.” Anxiety is not something a parent can keep secret from children, no matter how small. Children pick up on parents’ anxiety, even when not verbalized. We behave differently, we have physical symptoms, we sometimes don’t sleep, or we eat all the snacks in the house. The indications of anxiety are obvious to those who are closest to us. My sons could tell when I was uptight and used to tell me: “It’s time to meet a girlfriend for coffee!” I learned early that they knew when I worried, and they knew what could help. Sometimes they’d surprise me with a glass of juice or tell me to sit outside with my flowers. They were obviously aware when I was stressed.

But more important than our children’s awareness, parents teach children to live or not live with anxiety through modeling. When parents are burdened with anxiety, rather than processing it, our children learn how to live with similar anxiety themselves. Psycom published an article: “How to Avoid Triggering Anxiety in Your Childthat discusses the impact of parental anxiety on children:  “A study published in the American Journal of Psychiatry looked at almost 900 families with adult twins who have children to determine the effect of environmental influence on anxiety. Results showed strong support of environmental transmission of anxiety from parent to child, independent of genetics. In essence, this study showed that anxious behaviors can be learned and that a child’s anxious behavior can also increase the anxious behavior of the parent. The good news from this research is that parents can take an active role in reducing their child’s anxiety by changing their own behavior and modeling effective coping skills.” Minimizing anxiety isn’t just good for you, it is extremely good to model stress reduction skills for your children. They will do as you do. And even more, talking about it with them teaches them how to practice stress reduction techniques at times when they need it themselves.

To further illustrate the importance, a reduction of stress in a household increases quality of life and wellness throughout the lifespan. Unresolvable stress that lives in the household is a risk factor for all of the children in the household, not just the cancer survivor. We have learned through the ACE Study (Adverse Childhood Experiences) conducted by Kaiser Permanente in the 1990s that the impact of child traumatic stress can last well beyond childhood. Child traumatic stress, or unresolvable stress, can shatter children’s sense of security, making them feel helpless in a dangerous world. Imagine how a child feels days before returning to the hospital for scanning if parents can’t manage their stress about the testing?

According to SAMHSA (Substance Abuse and Mental Health Services Administration, research shows that children living in homes with unresolvable stress are more likely to have:

  • Learning problems, including lower grades and more suspensions and expulsions
  • Increased use of health services, including mental health services
  • Increased involvement with the child welfare and juvenile justice systems
  • Long term health problems, such as diabetes and heart disease

This is not to say that concerns WILL develop. It means that children exposed to unresolvable stress are AT RISK. The easiest way to minimize this risk is stress management. By reducing stress, parents can nurture a healthier home for the entire family.

 

How to Reduce the Anxiety

Reducing scanxiety comes down to making a decision to not let it live in your home. It doesn’t mean the fears are removed entirely, but your efforts to reduce stress every day will help you deal with fears when approaching scans and testing. Instead of broadcasting on social media that your scanxiety is mounting, share how you are managing your nervousness approaching the tests. My stress goes up when I watch conversations on social media about scanxiety. A person talks about how they can’t sleep or eat, and before you know it 20 people have shared their experiences, each one worse than the previous post. At the end of reading them, my stomach is in knots. I’m sure for many reading such posts, it is better to choose other activities than social media to reduce stress and stay focused on other things. Of course, you can state you are anxious; that is why support groups are so helpful! But then continue to share your desire to manage the stress instead of emphasizing that fear has taken over. You will feel better after you have stated it, and others in your group will feel better too! Make a conscious choice to manage the anxiety and process the emotion, rather than let the anxiety take hold and fester.

There are so many wonderful stress techniques that can help you, your children and adult survivors: walks with nature, yoga, meditation, playing games with your family, meeting a friend for coffee, or even journaling. Maybe do something that your survivor really enjoys now that treatment is over! And work with your team social worker or explore therapy if the stress is too much to manage on your own. I have a friend who scheduled a therapy session two days before scanning for three years after her daughter was declared NED.  Find what works best for you!

 

Many resources discuss how to process the Scanxiety to better manage it. Here are some of my favorites:

I also love this blog because it discusses responding to scanxiety in children as well as parents: Scanxiety in Children, The Brain Tumour Charity

Here are some additional stress reduction/mindfulness centering resources for the family:

When managing stress and fear becomes an everyday priority, stress reduction techniques are stronger and more helpful at times when anxiety starts to rise. Strengthen these skills so that when scanning/ testing time approaches, your family can face such stress-induced moments in a much calmer, more centered way that is less riddled with scanxiety. Wishing you and your family wonderful news at testing time and annual evaluations for years to come!